一個我們曾經(jīng)諱莫如深的健康殺手

Confronting an Ugly Killer

一個我們曾經(jīng)諱莫如深的健康殺手

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

在我的記憶中，我的外祖母有兩種不同的形象。實際上是兩個截然不同的人。

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.

第一種形象：她走下飛機，頭戴圓筒帽，身穿定制套裝，手戴白色手套。這就是她乘坐飛機時的著裝，當時人們會為了乘坐飛機而打扮一番。我們在機場迎接她，然后開車回家，車上充滿了“叢林梔子花”香水的味道，這不只是她的氣味。這是她的盔甲與生態(tài)系統(tǒng)，她以這種方式向世界宣告，并以此來打消自己的疑慮，相信她是名副其實的淑女。

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.

第二種形象：她坐在電視房里的沙發(fā)上。上衣敞開著。又皺又臟的寬松褲子也松開了。整個人完全松懈下來，但她沒有意識到，她的眼神茫然、迷離。即便她噴了“叢林梔子花”，我也聞不到那種氣味了。

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.

導致外祖母呈現(xiàn)兩種不同形象的不僅僅是時間，還有疾病。我的外祖母凱瑟琳·歐文·弗里耶(Kathryn Owen Frier)患有阿爾茨海默氏癥。這種疾病將一個十分擅長縱橫字謎的挑剔女人變成了一個無法分辨紅綠燈的邋遢女人。我記得自己曾為她感到羞愧，迅速轉(zhuǎn)移目光。我還記得自己為有這種反應而感到難過。

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.

外祖母去世已經(jīng)超過25年了。在她去世后的很長一段時間里，我都不愿描寫她離開的樣子，我擔心自己可能會讓她蒙羞。

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.

但現(xiàn)在世界不同了。對于這種疾病的不當?shù)男邜u感，在很大程度上已經(jīng)消散。人們坦誠并感同身受地審視它。

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.

如果大多數(shù)奧斯卡(Oscar)評審員都作出正確的決定，下一屆奧斯卡最佳女主角將由在電影《我想念我自己》(Still Alice)中有出色表現(xiàn)的朱麗安·摩爾(Julianne Moore)贏得，她在電影中扮演一名與早發(fā)型阿爾茨海默氏癥作斗爭的大學教授，這部電影將于下個月在全國范圍內(nèi)上映。摩爾并非首位向觀眾呈現(xiàn)這種疾病的明星——以前還有出演《攜手人生》(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)——但她對身患阿爾茨海默氏癥之苦的刻畫，顯得更私密親切。

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.

新紀錄片《格倫·坎貝爾：我就是我》(Glen Campbell: I’ll Be Me)記錄了阿爾茨海默氏癥最近對這名歌手造成的影響，他在20世紀70年代演唱了金曲《萊茵斯頓牛仔》(Rhinestone Cowboy)。

And one of the most acclaimed novels of 2014 is “We Are Not Ourselves,” by Matthew Thomas, which hinges on an agonizing case of Alzheimer’s. The book became an instant best seller.

2014年最受歡迎小說之一、馬修·托馬斯(Matthew Thoma)的《迷失自己》(We Are Not Ourselves)，主要講述了一名痛苦的阿爾茨海默氏癥患者的故事。該書出版后迅速登上暢銷榜。

“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·梅里爾·布洛克(Stefan Merrill Block)在《紐約客》(The New Yorker)中指出，“隨著嬰兒潮一代進入70歲， 阿爾茨海默氏癥也變得越來越普遍，越來越多的小說家正試圖對這個幽暗的領(lǐng)域進行探索。”

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年自己的第一部小說《遺忘的故事》(The Story of Forgetting)中就是這樣做的。作為電影原著的小說《我想念我自己》，也是大概在那個時候出版的，其銷量超過了100萬冊。

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.”

這部小說的作者莉薩·杰諾瓦(Lisa Genova)告訴我，它的成功不僅說明多少家庭受到了阿爾茨海默氏癥的影響，也說明了有多少人在被迫保持沉默。 “任何腦部疾病都像是個恥辱，”她說。 “它不像心臟或腎臟。而是你本人出了問題。”

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，人們突然開始與她分享現(xiàn)實生活中的故事，這些故事讓她感到震驚。托馬斯在宣傳《迷失自己》時也遇到了相同的情況。

“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.

“人們非常愿意表現(xiàn)出脆弱的一面，這讓我感到震驚，”他告訴我。他們都非常想談論阿爾茨海默氏癥。

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.

倡導組織阿爾茨海默氏癥協(xié)會(Alzheimer's Association)表示，預計罹患該疾病的美國人將從現(xiàn)在的500多萬增加到2050年的1600萬，而且要照顧他們以及患有其他形式的失智癥的年長美國人，每年的費用可能會達到1.2萬億美元。

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.”

協(xié)會的首席戰(zhàn)略官安吉拉·蓋格爾(Angela Geiger)把阿爾茨海默氏癥稱為“這十年中未得到應對的公眾健康危機”。她還告訴我，雖然聯(lián)邦大幅度增加了研究經(jīng)費，但是目前的開支并不能充分反映該疾病作為美國第六大致死原因的地位，對于這種疾病，“沒有任何治療手段能夠延緩病情發(fā)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.”

它是一個令人畏懼的謎，在不停侵蝕那些患病者的身份，剝奪了我們所珍視的控制幻覺。“阿爾茨海默氏癥站在現(xiàn)代生活的對立面，”托馬斯在《時代》周刊(Time)中寫道。“它是無序與混亂的勝利。”托馬斯的父親患了這種疾病。