一个我们曾经讳莫如深的健康杀手

My maternal grandmother lives in my memory as two distinct images. Two distinct people, really.

在我的记忆中，我的外祖母有两种不同的形象。实际上是两个截然不同的人。

The first: She’s coming off a plane, and she’s in a pillbox hat, a tailored suit and white gloves. That was how she dressed to fly, back in the days when people actually dressed to fly. We’d meet her at the airport, then drive home in a car suffused with Jungle Gardenia, which wasn’t just her scent. It was her armor and ecosystem, the way she told the world and reassured herself that she was a proper lady.

第一种形象：她走下飞机，头戴圆筒帽，身穿定制套装，手戴白色手套。这就是她乘坐飞机时的着装，当时人们会为了乘坐飞机而打扮一番。我们在机场迎接她，然后开车回家，车上充满了“丛林栀子花”香水的味道，这不只是她的气味。这是她的盔甲与生态系统，她以这种方式向世界宣告，并以此来打消自己的疑虑，相信她是名副其实的淑女。

The second image: She’s on the couch in our TV room. Her blouse has come undone. So have her slacks, which are wrinkled and smudged. She’s spilling out of everything and she’s oblivious, a dazed, haunted look in her eyes. If she’s wearing any Jungle Gardenia, I no longer smell it.

第二种形象：她坐在电视房里的沙发上。上衣敞开着。又皱又脏的宽松裤子也松开了。整个人完全松懈下来，但她没有意识到，她的眼神茫然、迷离。即便她喷了“丛林栀子花”，我也闻不到那种气味了。

These images are separated not just by years but by illness. My grandmother, Kathryn Owen Frier, developed Alzheimer’s. It turned a fastidious woman with a fiendish talent for crosswords into a slovenly one who couldn’t figure out a stoplight. I remember how mortified I felt for her, how quickly I turned my eyes away. And I remember how awful I felt for having that reaction.

导致外祖母呈现两种不同形象的不仅仅是时间，还有疾病。我的外祖母凯瑟琳·欧文·弗里耶(Kathryn Owen Frier)患有阿尔茨海默氏症。这种疾病将一个十分擅长纵横字谜的挑剔女人变成了一个无法分辨红绿灯的邋遢女人。我记得自己曾为她感到羞愧，迅速转移目光。我还记得自己为有这种反应而感到难过。

She died more than a quarter century ago. For a long time afterward, I rejected any impulse to write about the way she went, worried that I’d somehow be dishonoring her.

外祖母去世已经超过25年了。在她去世后的很长一段时间里，我都不愿描写她离开的样子，我担心自己可能会让她蒙羞。

But the world is different now. Much of the unwarranted shame surrounding Alzheimer’s has lifted. People are examining it with a new candor and empathy.

但现在世界不同了。对于这种疾病的不当的羞耻感，在很大程度上已经消散。人们坦诚并感同身受地审视它。

If most Oscar handicappers are correct, the next Best Actress statuette will go to Julianne Moore for her heartbreaking work as a university professor battling early-onset Alzheimer’s in “Still Alice,” to be released nationally next month. And while Moore isn’t the first star to shed a light on the disease — Judi Dench in “Iris” and Julie Christie in “Away From Her” also did so — her performance comes amid other intimate portraits of the toll that Alzheimer’s takes.

如果大多数奥斯卡(Oscar)评审员都作出正确的决定，下一届奥斯卡最佳女主角将由在电影《我想念我自己》(Still Alice)中有出色表现的朱丽安·摩尔(Julianne Moore)赢得，她在电影中扮演一名与早发型阿尔茨海默氏症作斗争的大学教授，这部电影将于下个月在全国范围内上映。摩尔并非首位向观众呈现这种疾病的明星——以前还有出演《携手人生》(Iris)的朱迪·丹奇(Judi Dench)和出演《柳暗花明》(Away From Her)的朱莉·克里斯蒂(Julie Christie)——但她对身患阿尔茨海默氏症之苦的刻画，显得更私密亲切。

A new documentary, “Glen Campbell: I’ll Be Me,” chronicles its recent impact on the singer who made “Rhinestone Cowboy” a megahit in the 1970s.

新纪录片《格伦·坎贝尔：我就是我》(Glen Campbell: I’ll Be Me)记录了阿尔茨海默氏症最近对这名歌手造成的影响，他在20世纪70年代演唱了金曲《莱茵斯顿牛仔》(Rhinestone Cowboy)。

And one of the most acclaimed novels of 2017 is “We Are Not Ourselves,” by Matthew Thomas, which hinges on an agonizing case of Alzheimer’s. The book became an instant best seller.

2017年最受欢迎小说之一、马修·托马斯(Matthew Thoma)的《迷失自己》(We Are Not Ourselves)，主要讲述了一名痛苦的阿尔茨海默氏症患者的故事。该书出版后迅速登上畅销榜。

“As baby boomers approach their 70s and Alzheimer’s disease becomes increasingly commonplace, more and more fiction writers are attempting to reach into that obscure space,” noted Stefan Merrill Block in The New Yorker last August.

今年8月，斯蒂芬·梅里尔·布洛克(Stefan Merrill Block)在《纽约客》(The New Yorker)中指出，“随着婴儿潮一代进入70岁， 阿尔茨海默氏症也变得越来越普遍，越来越多的小说家正试图对这个幽暗的领域进行探索。”

Block himself reached into it for his first novel, “The Story of Forgetting,” in 2008. The novel “Still Alice,” on which the movie is based, was published around that time and went on to sell more than a million copies.

布洛克在2008年自己的第一部小说《遗忘的故事》(The Story of Forgetting)中就是这样做的。作为电影原著的小说《我想念我自己》，也是大概在那个时候出版的，其销量超过了100万册。

Its author, Lisa Genova, told me that its success underscores not only how many families have been touched by Alzheimer’s but how many had been trapped in silence. “Any disease of the brain has a stigma,” she said. “It’s not like the heart or the kidney. This is something that’s wrong with you.”

这部小说的作者莉萨·杰诺瓦(Lisa Genova)告诉我，它的成功不仅说明多少家庭受到了阿尔茨海默氏症的影响，也说明了有多少人在被迫保持沉默。 “任何脑部疾病都像是个耻辱，”她说。 “它不像心脏或肾脏。而是你本人出了问题。”

After “Still Alice” came out, she was struck by all the real-life stories that people suddenly shared with her. Thomas had the same experience when he promoted “We Are Not Ourselves.”

在《我想念我自己》推出后，人们突然开始与她分享现实生活中的故事，这些故事让她感到震惊。托马斯在宣传《迷失自己》时也遇到了相同的情况。

“I was surprised by how willing people were to be vulnerable,” he told me. Alzheimer’s was something that they desperately needed to talk about.

“人们非常愿意表现出脆弱的一面，这让我感到震惊，”他告诉我。他们都非常想谈论阿尔茨海默氏症。

According to the Alzheimer’s Association, an advocacy group, the estimated number of Americans with the disease will rise from more than five million now to as many as 16 million in 2050, and the cost of caring for them and older Americans with other forms of dementia could reach $1.2 trillion annually.

倡导组织阿尔茨海默氏症协会(Alzheimer's Association)表示，预计罹患该疾病的美国人将从现在的500多万增加到2050年的1600万，而且要照顾他们以及患有其他形式的失智症的年长美国人，每年的费用可能会达到1.2万亿美元。

Angela Geiger, the association’s chief strategy officer, calls Alzheimer’s “the unaddressed public health crisis of this decade.” And she told me that while there have been significant increases in federal funding for research, current spending doesn’t adequately reflect the disease’s status as the sixth leading cause of death in this country, one for which there’s “no treatment that slows the progression.”

协会的首席战略官安吉拉·盖格尔(Angela Geiger)把阿尔茨海默氏症称为“这十年中未得到应对的公众健康危机”。她还告诉我，虽然联邦大幅度增加了研究经费，但是目前的开支并不能充分反映该疾病作为美国第六大致死原因的地位，对于这种疾病，“没有任何治疗手段能够延缓病情发展”。

It’s a hellish riddle, eroding the identities of those it afflicts and depriving us all of our cherished illusions of control. “Alzheimer’s disease is the opposite of modern life,” wrote Thomas, whose father had it, in Time magazine. “It’s the ascendancy of entropy and chaos.”

它是一个令人畏惧的谜，在不停侵蚀那些患病者的身份，剥夺了我们所珍视的控制幻觉。“阿尔茨海默氏症站在现代生活的对立面，”托马斯在《时代》周刊(Time)中写道。“它是无序与混乱的胜利。”托马斯的父亲患了这种疾病。

It’s not perfumed. It’s not gloved. But it’s what happens to many people and will happen to too many more, especially if we don’t stare unblinkingly at it.

它没有喷香水，也没有戴手套。很多人都患了这种病，而且还会有更多的人患上这种病，特别是如果我们不全神贯注地对待它的话。

“If we’re shy about it, then we don’t have a sense of urgency,” Genova said. We’re conquering the shyness. With the urgency, we have a ways to go.

“如果我们避讳它，那么我们就会没有紧迫感，”杰诺瓦热那亚说。我们正在克服羞怯。有了这种紧迫性，我们才知道该做些什么。