《The Edge of Normal》试译
我的孩子也许是个正常人
The Edge of Normal
[作品简介]
本书为Kindle Singles作品。原作品见 Amazon.com: http://dou.bz/0Ya3Ua
在女儿Nora降生前，Hana Schank全家一直按照她制定的家庭计划实现着的每一个目标：丈夫Steven博士毕业，在大学中谋得一份教职工作，一家人从住了多年的布鲁克林老屋搬到曼哈顿的新房子中。他们有一个儿子，女儿Nora的降临给这个普通的纽约家庭带来新的期待。这时，Hana却发现女儿的视力有些异常。她带着Nora跑遍曼哈顿的诊所，医生们做出的诊断让Hana几乎崩溃：Nora患有先天性白化病，并伴有眼球震颤和恐光症等眼部异常。从此只能戴着特殊墨镜生活。
Hana在Nora的白化病确诊后，不断以“每个人都有不同形式的残疾”做自我安慰，她试图让女儿过正常人的生活，读正常儿童的学校，在社交网站建立白化病亲子互助团体，给全纽约的先天性白化病儿童送去福音。本书记录了六年期间，Hana帮助女儿树立正面面对先天性缺陷的勇气的点滴故事。作为母亲，Hana也走过了一段苦涩难当，却精彩纷呈的成长之路。The Edge of Normal被评为2015年年度最佳Kindle Singles作品（亚马逊自出版平台作品，长度多在1万字到3万字）。
请翻译以下片段，并在活动截止之前提交你的译文。提交地址：https://read.douban.com/translation/19/
While I now understood where Nora stood within the existing medical establishment, it was harder for others in my life to reach the same place.
“So how is she doing?” my friends would ask.
“Nora?” I’d say. “She’s great.”
“But how is she doing?”
I still get asked this today. It could be any friend, on any day. Or sometimes it’s a relative at a family gathering. Often it’s at one of those hastily scheduled and rescheduled dinners you have when you haven’t seen someone in a while and you’ve both abruptly made an attempt to catch up, or at the occasional bar mitzvah or wedding or impromptu family gathering.
I know what this person wants. She wants me to tell her that there is a new treatment on the horizon, or that Nora’s vision has miraculously improved overnight. I’ve already explained to this person, in multiple previous conversations, that Nora’s condition is stable. In the parlance of today’s world: it is what it is. Her vision is not likely to improve. It’s also not likely to degrade. The way she sees today will be the way she sees next year and the year after that. Barring a major medical breakthrough or a technological advance, Nora’s got the eyes she’s got.
But in today’s world that is a nearly impossible concept to grab hold of. In our world everything is fixable or improving. There is no problem medicine can’t solve, no course of treatment you can’t employ. How modern can our world be if a child born legally blind simply remains legally blind? It sounds archaic, like something from the Stone Age. Blindness. So last Tuesday.
“She’s doing really well,” I say. I might elaborate with some recent development: she’s reading, she’s doing great in math class, she’s on a soccer team, she’s learning to ski. But this rarely leaves my friend satisfied.
“Is her vision improving?” this person asks. “Is there something they can do?”
And then I give in and reassure this person that the world is in fact as she has always thought it was.
“There’s a clinical trial going on at the NIH,” I say. Or “They’re having some success with using dopamine at the University of Minnesota.”
I don’t say that these are the same clinical trials that have been going on in one form or another since Nora was born, and that even if they’re successful, they won’t “fix” her vision. Nothing short of new eyes will do that. But my job here is to maintain the façade that everything in life is treatable.
------
尽管我明白在现有的医疗水平下 Nora 处于一种什么样的境地，但我周遭的人却很难明白这一点。
朋友们会问：“孩子现在怎么样？”
我说：“Nora？还好。”
“具体怎么样？”
时至今日我还是会被问起，随便哪一天，可能来自任何一个朋友。抑或有些时候家人团聚，亲戚也会问起来。
我知道大家想要什么样的答案，大家希望我能告诉他们：市面上出现了一种新的疗法，或者说 Nora 的视力一夜之间奇迹般地好转了，尽管我已经在和他们之前的几次对话中解释过，Nora 目前的状况很稳定。简单来讲：情况该是怎样就是怎样。她的视力不见好转，也不会恶化。Nora 今天观察世界的方式，和她明年、后年观察世界的方式将会一样。
但是今时今日，这样的观念是站不住脚的。当今世界，一切都在变化和提高，医学上没有解决不了的难题，也不存在无法运用的治疗方案。如果一个孩子生来就看不见并且一直这样下去，我们还能说我们的世界有多么现代化？这事听上去是在古代才会发生的，仿佛是石器时代的事情。失明，就是给人这样的感觉。上周二即是如此。
“她非常棒，” 我会说。可能还会结合一些近况：Nora 开始阅读、在数学课上表现很好、她进入了足球队、开始学着滑雪。然而这并不能让我的朋友们满意。
“她的视力在好转吗？” 有人会问，“医生有什么可以做的吗？”
然后我就开始安抚这个人，以便告诉她世界一直都如她认为的那样好。
我说："美国国立卫生研究院（NIH）有一种临床试验，" 或者是 “明尼苏达州立大学在使用多巴胺方面取得了一些成绩。”
我不会告诉她说从 Nora 生下来开始，这些临床试验其实就已经以这样或那样的方式在进行了，而即使它们都成功了，也无法修复 Nora 的视力，除非有一双新的眼睛，否则 Nora 的视力很难恢复。因为在这件事情上，我的工作是向大家传递一种正面的信息：不管什么病都能治好。
The Edge of Normal
[作品简介]
本书为Kindle Singles作品。原作品见 Amazon.com: http://dou.bz/0Ya3Ua
在女儿Nora降生前，Hana Schank全家一直按照她制定的家庭计划实现着的每一个目标：丈夫Steven博士毕业，在大学中谋得一份教职工作，一家人从住了多年的布鲁克林老屋搬到曼哈顿的新房子中。他们有一个儿子，女儿Nora的降临给这个普通的纽约家庭带来新的期待。这时，Hana却发现女儿的视力有些异常。她带着Nora跑遍曼哈顿的诊所，医生们做出的诊断让Hana几乎崩溃：Nora患有先天性白化病，并伴有眼球震颤和恐光症等眼部异常。从此只能戴着特殊墨镜生活。
Hana在Nora的白化病确诊后，不断以“每个人都有不同形式的残疾”做自我安慰，她试图让女儿过正常人的生活，读正常儿童的学校，在社交网站建立白化病亲子互助团体，给全纽约的先天性白化病儿童送去福音。本书记录了六年期间，Hana帮助女儿树立正面面对先天性缺陷的勇气的点滴故事。作为母亲，Hana也走过了一段苦涩难当，却精彩纷呈的成长之路。The Edge of Normal被评为2015年年度最佳Kindle Singles作品（亚马逊自出版平台作品，长度多在1万字到3万字）。
请翻译以下片段，并在活动截止之前提交你的译文。提交地址：https://read.douban.com/translation/19/
While I now understood where Nora stood within the existing medical establishment, it was harder for others in my life to reach the same place.
“So how is she doing?” my friends would ask.
“Nora?” I’d say. “She’s great.”
“But how is she doing?”
I still get asked this today. It could be any friend, on any day. Or sometimes it’s a relative at a family gathering. Often it’s at one of those hastily scheduled and rescheduled dinners you have when you haven’t seen someone in a while and you’ve both abruptly made an attempt to catch up, or at the occasional bar mitzvah or wedding or impromptu family gathering.
I know what this person wants. She wants me to tell her that there is a new treatment on the horizon, or that Nora’s vision has miraculously improved overnight. I’ve already explained to this person, in multiple previous conversations, that Nora’s condition is stable. In the parlance of today’s world: it is what it is. Her vision is not likely to improve. It’s also not likely to degrade. The way she sees today will be the way she sees next year and the year after that. Barring a major medical breakthrough or a technological advance, Nora’s got the eyes she’s got.
But in today’s world that is a nearly impossible concept to grab hold of. In our world everything is fixable or improving. There is no problem medicine can’t solve, no course of treatment you can’t employ. How modern can our world be if a child born legally blind simply remains legally blind? It sounds archaic, like something from the Stone Age. Blindness. So last Tuesday.
“She’s doing really well,” I say. I might elaborate with some recent development: she’s reading, she’s doing great in math class, she’s on a soccer team, she’s learning to ski. But this rarely leaves my friend satisfied.
“Is her vision improving?” this person asks. “Is there something they can do?”
And then I give in and reassure this person that the world is in fact as she has always thought it was.
“There’s a clinical trial going on at the NIH,” I say. Or “They’re having some success with using dopamine at the University of Minnesota.”
I don’t say that these are the same clinical trials that have been going on in one form or another since Nora was born, and that even if they’re successful, they won’t “fix” her vision. Nothing short of new eyes will do that. But my job here is to maintain the façade that everything in life is treatable.
------
尽管我明白在现有的医疗水平下 Nora 处于一种什么样的境地，但我周遭的人却很难明白这一点。
朋友们会问：“孩子现在怎么样？”
我说：“Nora？还好。”
“具体怎么样？”
时至今日我还是会被问起，随便哪一天，可能来自任何一个朋友。抑或有些时候家人团聚，亲戚也会问起来。
我知道大家想要什么样的答案，大家希望我能告诉他们：市面上出现了一种新的疗法，或者说 Nora 的视力一夜之间奇迹般地好转了，尽管我已经在和他们之前的几次对话中解释过，Nora 目前的状况很稳定。简单来讲：情况该是怎样就是怎样。她的视力不见好转，也不会恶化。Nora 今天观察世界的方式，和她明年、后年观察世界的方式将会一样。
但是今时今日，这样的观念是站不住脚的。当今世界，一切都在变化和提高，医学上没有解决不了的难题，也不存在无法运用的治疗方案。如果一个孩子生来就看不见并且一直这样下去，我们还能说我们的世界有多么现代化？这事听上去是在古代才会发生的，仿佛是石器时代的事情。失明，就是给人这样的感觉。上周二即是如此。
“她非常棒，” 我会说。可能还会结合一些近况：Nora 开始阅读、在数学课上表现很好、她进入了足球队、开始学着滑雪。然而这并不能让我的朋友们满意。
“她的视力在好转吗？” 有人会问，“医生有什么可以做的吗？”
然后我就开始安抚这个人，以便告诉她世界一直都如她认为的那样好。
我说："美国国立卫生研究院（NIH）有一种临床试验，" 或者是 “明尼苏达州立大学在使用多巴胺方面取得了一些成绩。”
我不会告诉她说从 Nora 生下来开始，这些临床试验其实就已经以这样或那样的方式在进行了，而即使它们都成功了，也无法修复 Nora 的视力，除非有一双新的眼睛，否则 Nora 的视力很难恢复。因为在这件事情上，我的工作是向大家传递一种正面的信息：不管什么病都能治好。
