Lisa Genova - Still Alice

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Still Alice: краткое содержание, описание и аннотация

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SUMMARY: "Powerful, insightful, tragic, inspirational…and all too true." Alireza Atri, Massachusetts General Hospital Neurologist “Readers…are artfully and realistically led through…a window into what to expect, highlighting the importance of allowing the person with the disease to remain a vibrant and contributing member of the community…" Peter Reed, PhD, Director of Programs, National Alzheimer's Association “With grace and compassion, Lisa Genova writes about the enormous white emptiness created by Alzheimer’s in the mind of the still-too-young and active Alice. A kind of ominous suspense attends her gathering forgetfulness, and Genova puts us, sympathetically, right inside her plight. Somehow, too, she portrays the family’s response as a loving one, and hints at the other hopeful, helpful response that science will eventually provide.” Mopsy Kennedy, Improper Bostonian "An intensely intimate portrait of Alzheimer's seasoned with highly accurate and useful information about this insidious and devastating disease." Dr. Rudolph E. Tanzi, co-author, Decoding Darkness: The Search for the Genetic Causes of Alzheimer's Disease “Her (Alice's) thought patterns are so eerily like my own...amazing. It was like being in my own head and like being in hers.” James Smith, diagnosed with Alzheimer’s, age 45 “...something for the world to read.” Jeanne Lee, author of Just Love Me: My Life Turned Upside-Down By Alzheimer’s “A laser-precise light into the lives of people with dementia and the people who love them.” Carole Mulliken, Co-Founder of DementiaUSA "A work of pure genius. This is the book that I and many of my colleagues have anxiously awaited. The reader will journey down Dementia Road in a way that only those of us with Dementia have experienced. Until now." Charley Schneider, author of Don't Bury Me, It Ain't Over Yet

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"Fine," said Lydia. She turned herself squarely toward the stove and stirred vigorously, obviously hurt.

Tambourine, serpent.

"I still can't find it!" yelled Anna.

"I'll go help her," said Lydia.

Compass! Tambourine, serpent, compass.

Relieved, Alice took out the ingredients for the white-chocolate bread pudding and placed them on the counter--vanilla extract, a pint of heavy cream, milk, sugar, white chocolate, a loaf of challah bread, and two half-dozen cartons of eggs. A dozen eggs? If the piece of notebook paper with her mother's recipe on it still existed, Alice didn't know where it was. She hadn't needed to refer to it in years. It was a simple recipe, arguably better than Marty's cheesecake, and she'd made it every Christmas Eve since she was a young girl. How many eggs? It had to be more than six, or she would've taken out only one carton. Was it seven, eight, nine?

She tried skipping over the eggs for a moment, but the other ingredients looked just as foreign. Was she supposed to use all of the cream or measure out only some of it? How much sugar? Was she supposed to combine everything all at once or in a particular sequence? What pan did she use? At what temperature did she bake it and for how long? No possibility rang true. The information just wasn't there.

What the hell is wrong with me?

She revisited the eggs. Still nothing. She hated those fucking eggs. She held one in her hand and threw it as hard as she could into the sink. One by one, she destroyed them all. It was marginally satisfying, but not enough. She needed to break something else, something that required more muscle, something that would exhaust her. She scanned the kitchen. Her eyes were furious and wild when they met Lydia's in the doorway.

"Mom, what are you doing?"

The massacre had not been confined to the sink. Empty shards of shell and yolk were splattered all over the wall and counter, and the faces of the cabinets were streaked with tears of albumen.

"The eggs were past the expiration date. There's no pudding this year."

"Aw, we have to have the pudding, it's Christmas Eve."

"Well, there aren't any more eggs, and I'm tired of being in this hot kitchen."

"I'll go to the store. Go into the living room and relax, I'll make the pudding."

Alice walked into the living room, shaking but no longer riding that powerful wave of anger, not sure whether she was feeling deprived or thankful. John, Tom, Anna, and Charlie were all seated and in conversation, holding glasses of red wine. Apparently, someone had found the opener. With her coat and hat on, Lydia poked her head into the room.

"Mom, how many eggs do I need?"

JANUARY 2004

She had good reasons to cancel her appointments on the morning of January nineteenth with the neuropsychologist and Dr. Davis. Harvard's exam week for the fall semester fell in January, after the students returned from Winter Break, and the final exam for Alice's cognition class was scheduled for that morning. Her attendance wasn't crucial, but she liked the sense of closure that being there provided, of seeing her students through the course from start to finish. With some reluctance, she arranged for a teaching fellow to proctor the exam. The bigger good reason was that her mother and sister had died on January nineteenth, thirty-two years ago. She didn't consider herself superstitious like John, but she'd never received good news on that day. She'd asked the receptionist for another date, but it was either then or four weeks from then. So she took it, and she didn't cancel. The idea of waiting another month was that unappealing.

She imagined her students back at Harvard, nervous about what questions they would be asked, hurrying a semester's worth of knowledge onto the pages of their blue exam books, hoping their heavily crammed short-term memories wouldn't fail them. She understood exactly how they felt. Most of the neuropsychological tests administered to her that morning--Stroop, Raven's Colored Progressive Matrices, Luria Mental Rotation, Boston Naming, WAIS-R Picture Arrangement, Benton Visual Retention, NYU Story Recall--were familiar to her. They were designed to tease out any subtle weakness in the integrity of language fluency, recent memory, and reasoning processes. She had, in fact, taken many of them before, serving as a negative control in the cognition studies of various graduate students. But today, she wasn't a control. She was the subject being tested.

The copying, recalling, arranging, and naming took almost two hours to complete. Like the students she imagined, she felt relieved to be done and fairly confident in her performance. Escorted by the neuropsychologist, Alice entered Dr. Davis's office and sat in one of the two chairs arranged side by side, facing him. He acknowledged the empty chair next to her with a disappointed sigh. Even before he spoke, she knew she was in trouble.

"Alice, didn't we talk about you coming here with someone last time?"

"We did."

"Okay, it's a requirement of this unit that every patient comes in with someone who knows them. I won't be able to treat you properly unless I have an accurate picture of what's going on, and I can't be sure I have that information without this person present. Next time, Alice, no excuses. Do you agree to this?"

"Yes."

Next time. Any solid relief and confidence generated from her self-evaluated competence in the neuropsychological exams evaporated.

"I have the results of all of your tests now, so we can go over everything. I don't see anything abnormal in your MRI. No cerebral vascular disease, no evidence of any small, silent strokes, no hydrocephalus or masses. Everything there looks fine. And your blood work and lumbar puncture all came back negative as well. I was as aggressive here as we can be and looked for every condition that could sensibly account for the kinds of symptoms you're experiencing. So we know you don't have HIV, cancer, a vitamin deficiency, mitochondrial disease, or a number of other rare conditions."

His speech was well constructed, obviously not his first delivery of its kind. The "what she did have" would come at the end. She nodded, letting him know that she followed him and that he should continue.

"You scored in the ninety-ninth percentile in your ability to attend, in things like abstract reasoning, spatial skills, and language fluency. But unfortunately, here's what I do see. You have a recent memory impairment that is out of proportion to your age and is a significant decline in your previous level of functioning. I know this from your own account of the problems you've been having and from your description of the degree to which they've been interfering with your professional life. I also personally witnessed it when you couldn't retrieve the address I'd asked you to remember the last time you were here. And although you were perfect in most of the cognitive domains today, you showed a lot of variability in two of the tasks that were related to recent memory. In fact, you were down to the sixtieth percentile in one.

"When I put all of this information together, Alice, what it tells me is that you fit the criteria of having probable Alzheimer's disease."

Alzheimer's disease.

The words knocked the wind out of her. What exactly did he just tell her? She repeated his words in her head. Probable. It gave her the will to inhale, the ability to speak.

"So 'probable' means that I might not fit the criteria."

"No, we use the word 'probable' because the only definitive diagnosis for Alzheimer's right now is by examining the histology of the brain tissue, which requires either an autopsy or a biopsy, neither of which is a good option for you. It's a clinical diagnosis. There's no dementia protein in your blood that can tell us you have it, and we wouldn't expect to see any brain atrophy on an MRI until much later stages in the disease."

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