來，認識一下ALS“冰桶挑戰賽”的發起者

Eleanor+Goldberg

By now， you've probably seen at least a handful of your Facebook friends risk humiliation2） and hypothermia3） by dumping ice on their heads in the name of ALS.

Within just a few weeks， the grassroots "ice bucket challenge" reached Mark Zuckerberg， who naturally challenged Bill Gates to do it next. The rules， after all， demand that you task a friend to participate or donate money. After Ethel Kennedy—widow of RFK—doused4） herself in ice cubes， she challenged President Obama to do the same. He opted to take the contribution route instead.

Pete Frates—the 29-year-old guy who's being credited with getting this quirky5） stunt6） off the ground—waited until Aug.14th to get soaked. The native Bostonian， who was diagnosed with ALS two years ago， did it in his beloved Fenway Park， surrounded by Red Sox manager， John Farrell， third baseman， Will Middlebrooks， and a number of his family members， including his pregnant wife， according to ESPN.

Initially， Frates said on Facebook in July， "ice water and ALS are a bad mix." But Frates deserves a break for waiting， even if he sat back and watched 200 people in Copley Square get involved in the challenge in his honor on Aug. 7th. It was the event that put the ice bucket challenge on the map7） and all over social media， the AP reported. After all， his commitment to getting the word out8） helped bring in nearly $6 million for ALS organizations， according to ESPN. It's these kinds of staggering9） figures he had been hoping for from the very beginning.

Back in 2012， Frates was experiencing some of the quintessential10） ALS symptoms， but he didn't know it at the time. He Googled some of what had been bothering him and he was shocked when a number of sites pointed him to ALS—a progressive neurodegenerative11） disease that leads to muscle weakness， loss of the use of arms and legs and difficulty speaking， breathing and swallowing.

He was "devastated12）"， he wrote in a blog for Huffington Post. But in that moment， he was also reinvigorated13）. This kind of debilitating14） disease wasn't "supposed" to strike a strong accomplished athlete like Frates.

The former Division I15） college baseball player saw his dreams come true when he hit a homerun in the Beanpot Championship at Fenway. However， just as soon as Frates got his diagnosis， he decided to devise a new dream.

Two years after his diagnosis， the disease—which has no cure or treatment—has advanced quickly. Frates is now paralyzed， can't talk， and relies on a feeding tube to eat. He's able to communicate by using eye-tracking technology.endprint

But as is the case with many people living with ALS， Frates' mind is sharp. "Inside I'm as sharp as ever—if not sharper than I've ever been，" Frates said in a video posted to his website. "Because when you sit and can't really move， when you're observing all day ... you notice every little thing. My memory has gotten better. I just notice things I didn't notice before."

Frates has already fulfilled one part of his new dream， getting the world to talk about ALS and empty their pockets for organizations that are researching a cure. The next part， though， he can only hope will come as soon as possible.

"My dream is for this article to be found by someone in a Google search one day，" Frates wrote in his Huffington Post blog， "and for he or she to wonder how anyone ever could have died from something treated so easily."

迄今為止，你可能已經看到，你至少有好幾個Facebook好友冒著丟面子和體溫過低的風險，以ALS （編注：即肌萎縮側索硬化癥，該病癥的患者又稱“漸凍人”）的名義將冰塊澆在了自己的頭上。

在短短幾周內，源自草根階層的冰桶挑戰賽就蔓延到了馬克·扎克伯格（編注：Facebook創始人）那里，他自然而然地向比爾·蓋茨發起了挑戰，請他接力。要知道，冰桶挑戰賽的規則就是要你挑戰一個朋友，讓其要么參與，要么捐款。在埃塞爾·肯尼迪（美國前總統羅伯特·F·肯尼迪的遺孀）用冰水將自己澆濕以后，她向奧巴馬總統發起了挑戰，請他也這么做。不過，奧巴馬選的是捐款。

29歲的皮特·弗雷茨一直被認為是這一怪“把戲”的發起人，但他等到8月14號（編注：本文寫于8月15日）才把自己澆濕。弗雷茨是土生土長的波士頓人，兩年前被診斷出患有ALS。他當時是在他深愛的芬威球場上接受的挑戰。據ESPN （編注：指美國娛樂與體育節目電視網）報道，當時在場的還有“紅襪隊”的主教練約翰·法雷爾、三壘手威爾·米德布魯克斯，以及弗雷茨的許多家人，他懷孕的妻子也在其中。

最初，弗雷茨于7月在Facebook上說過：“冰水和ALS結合起來非常糟糕。”但是弗雷茨有理由休息一下，靜靜等待再接受這個挑戰——雖然他在8月7日不動聲色地觀看了200人在科普利廣場以他的名義參與了挑戰。據美聯社報道，正是這件事使冰桶挑戰賽名聲大振，席卷了社交媒體。畢竟，據ESPN報道，弗雷茨承諾要幫助宣傳，而此舉給諸多ALS機構帶來了近600萬美元的善款。這些驚人的數字正是他從一開始就在期待的。

早在2012年，弗雷茨身上就一直在出現ALS的某些典型癥狀，但他當時并不知道那是身患ALS引起的。他在谷歌上搜索了一些一直困擾著他的情況，震驚地發現許多網站都將他的情況指向了ALS——一種進行性神經變性癥，可導致肌肉無力，四肢功能喪失，講話、呼吸和吞咽困難。

他當時“崩潰”了，他在《赫芬頓郵報》網站的博客中這樣寫道。但也就在那一刻，他又振作了起來。這種令人變得虛弱不堪的疾病不“應該”擊倒一位像弗雷茨那樣堅強的優秀運動員。

弗雷茨以前是甲級大學棒球手，當他在芬威球場舉辦的“豆鍋錦標賽”中擊出了全壘打時，他見證了自己夢想成真的那一刻。然而，就在弗雷茨拿到確診書的那一刻，他立刻決定設計一個新的夢想。

在他被確診兩年后，他得的這個無藥可救、無醫可治的病已經迅速惡化。弗雷茨現在全身癱瘓，不能講話，只能依靠飼管進食。他能夠利用眼球追蹤技術進行交流。

但是和許多ALS患者一樣，弗雷茨的頭腦非常敏銳。“我的內心若算不上勝過以往，也算得上一如既往的敏銳，”弗雷茨在其網站上發布的一個視頻中說，“因為當你坐在那里一動不能動的時候，當你一整天都在觀察的時候……你會注意到每件微小的事情。我的記性變得更好了。我就是會注意到以往從未注意過的事情。”

弗雷茨已經實現了他新夢想的一部分，那就是讓世界談論ALS，并傾囊相助研究該病治療方法的那些組織。盡管如此，對于他新夢想的另一部分，他只能希望它會盡快實現。

“我的夢想就是希望某天有人用谷歌搜索時能看到這篇文章，”弗雷茨在《赫芬頓郵報》網站的博客中寫道，“并讓他或她想要去弄明白，怎么會有人死于那么容易被治愈的疾病。”

1. ALS "Ice Bucket Challenge"： ALS“冰桶挑戰賽”，是一項慈善活動。該活動要求參與者在網絡上發布自己被冰水澆遍全身的視頻，然后該參與者便可以邀請其他人來參與這一活動。活動規定，被邀請者要么在24小時內接受挑戰，要么就選擇為對抗ALS （肌萎縮側索硬化癥）捐出100美元。

2. humiliation [hju??m?li?e??n] n. 丟臉；蒙羞

3. hypothermia [?ha?p??θ??mi?] n. 體溫過低；低體溫

4. douse [da?s] vt. （把液體）澆（或灑、潑）在……上

5. quirky [kw??ki] adj. 奇特的，離奇的，古怪的

6. stunt [st?nt] n. 引人注意的花招；噱頭；（電影中的）驚險動作

7. put （sth.） on the map： 使（某事物）出名（或流行）

8. get the word out： 把消息傳開去；幫助宣傳

9. staggering [?st?ɡ?r??] adj. 令人震驚的

10. quintessential [?kw?nt??sen?l] adj. 典型的

11. neurodegenerative [?nj??r??d??d?en?r?t?v] adj. 神經變性的

12. devastated [?dev?ste?t?d] adj. 極為震驚難過的；非常傷心的

13. reinvigorated [?ri??n?v?ɡ?re?t?d] adj. 振作起來的；恢復活力的

14. debilitating [d??b?l?te?t??] adj. 使虛弱的；使衰弱的

15. Division I： 簡稱D-I，是由美國的全國大學體育協會（NCAA）認可的最高等級的大學間的田徑賽事級別。endprint