Still Alice Still Alice 8.6分

短暂,却美丽

Xuyehua
2018-03-26 09:03:08
书正文的每一页都印了一只蝴蝶。书中也有很多关于蝴蝶的意象,butterfly necklace,butterfly blue bag,butterfly kite,“butterfly” folder。蝴蝶,短暂却美丽的一生。就像Alice的一生。
She remembered being six or seven and crying over the fates of the butterflies in her yard after learning that they lived for only a few days. Her mother had comforted her and told her not to be sad for the butterflies, that just because their lives were short didn’t mean they were tragic. Watching them flying in the warm sun among the daisies in their garden, her mother had said to her, See, they have a beautiful life.

书中三个情节,让我掉眼泪了。
She thought about bolting upstairs to the full bath, but she was strangely stuck and dumbfounded in the Twilight Zone–like, bathroomless dimension of the first floor. She was unable to hold it in any longer. She had an ethereal sense of observing herself, this poor, unfamiliar woman crying in the hallway. It didn’t sound like the somewhat guarded cry of an adult woman. It was the scared, defeated, and unrestrained crying of a small child. Her tears weren’t all she wasn’t able to contain any longer. John burst through the front door just in time to witness the urine streaming down her right leg, soaking her sweatpants, sock, and sneaker. “Don’t look at me!”“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.” He held her, and rocked her slightly side to side, soothing her as she’d seen him calm their children after innumerable physical injuries and social injustices. “I couldn’t find the bathroom.” “It’s okay.” “I’m sorry.” “Don’t be sorry, it’s okay. Come on, let’s get you changed. The day’s already heating up, you need something lighter anyway.”
丈夫的温柔和体谅。

John woke her on the couch. The television was off, and the house was dark. She must’ve fallen asleep before the movie ended. She didn’t remember the ending anyway. He guided her up the stairs to their bedroom. She stood at her side of the bed, her hand over her disbelieving mouth, tears in her eyes, the worry expelled from her stomach and mind. Lydia’s journal lay on her pillow.
女儿的理解和包容。

“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 ‘me-ness’ vulnerable to this disease? Or is my identity something that transcends neurons, proteins, 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, tofind 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.
自己的坚强和勇敢。

书中对John的描写,反复会提到一句“He spun his wedding ring.”虽然有很多很感人的情节,但不免还是有些失望。大概婚姻就是如此吧,最完美的关系就是互相欣赏、齐头并进,但如若一方掉队了,另一方也不会因为爱情而慢下来停下来,而是会做出最理性的安排,然后自己独自前行。其实,对John最失望的地方倒不在于他丢下Alice,而是他似乎一度为了合理化自己的决定而挑拨儿女们和Alice的关系。
“I’m not dismissing what she wants. I’m doing the best I can to do what’s right for both of us. If she got everything she unilaterally wanted, we wouldn’t even be having this conversation.”
“What the hell does that mean?” asked the mother.
“Nothing.”
虽然John就此打住没再继续,但他是不是原打算说,如果不是他坚持要孩子,他们甚至都不会出生。

最后的结局,临床试验失败,新药和安慰剂并无多大区别。但Alice和两个女儿还有护工的生活倒也平和温馨。按照后面她们的对话来看,John是接受了NY的新工作,不意外。但Alice和两个女儿的关系,比患病之前拉近了很多很多。大女儿说话刻薄,在得知他们都有可能患阿兹海默的时候,她说“But not in time for us, is that what you’re saying? So my kids will be fine, but I’ll be a mindless zombie?”;在妹妹说过完暑期就要回LA时,她讽刺地说“Mom, that’s Lydia, your daughter”,再加上她之前种种的以自己为中心的表现,事事要与妹妹比较,争强好胜,我真是打心眼里不喜欢这个角色,但后来,在父亲逃避,她又刚产下一对龙凤胎的艰难时刻,她依然扛起照顾整个大家庭的担子,真让人打心眼里佩服她。其实她可能就是所谓的刀子嘴豆腐心吧,对别人看似狠,对自己更狠。这在他们三个的一次争论中也可以看出来。
“Lydia, what time is your play?” asked Alice.
“Mom, you just asked that. Don’t worry about it,” said Tom.
 “It’s at eight o’clock, Mom,” said Lydia. “Tom, you’re not helping.”
 “No, you’re not helping. Why should she have to worry about remembering something that she doesn’t have to remember?”
“She won’t worry about it if she puts it in her BlackBerry. Just let her do it,” said Lydia.
 “Well, she shouldn’t be relying on that BlackBerry anyway. She should be exercising her memory whenever she can,” said Anna.
“So which is it? Should she be memorizing my showtime or totally relying on us?” asked Lydia.
“You should be encouraging her to focus and really pay attention. She should try to recall the information on her own and not get lazy,” said Anna.
“She’s not lazy,” said Lydia.
“You and that BlackBerry are enabling her. Look, Mom, what time is Lydia’s show tomorrow?” asked Anna.
 “I don’t know. That’s why I asked her,” said Alice. “She told you the answer twice, Mom. Can you try to remember what she said?”
“Anna, stop quizzing her,” said Tom.
“I was going to enter it in my BlackBerry, but you interrupted me.”
“I’m not asking you to look it up in your BlackBerry. I’m asking you to remember the time she said.”
“Well, I didn’t try to remember the time, because I was going to punch it in.” “Mom, just think for a second. What time is Lydia’s show tomorrow?”
Anna希望妈妈尽可能的多训练自己,而不是过早地依赖别人依赖黑莓手机,其实这未尝不是她对自己以后的要求,因为她已经确定携带阿兹海默易感基因。

全书以一个早发型阿兹海默症患者的视角,带读者体验了阿兹海默患者的所感所想所体验的所经历的种种。
起起伏伏的人生,潮涨潮落的情绪,时而紧张时而舒缓的家庭关系,还有,一直在那里的爱和亲情。
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