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曾经最强的我

Anthony Carbajal Documentary: Strongest I'll Ever Be

我的能力正缓慢衰退
My abilities are slowly diminishing.
我能适应其中每一分变化
So I’m like… able to like adapt to each one.
有时睡醒 我会…… 比如数月前
Some days I’m like I woke up like a few couple months ago
然后我意识到手指不再受控
and I realize I couldn’t hold this finger anymore.
就像这个手指没有了
Just like that… that one was gone.
而且奇怪的是它不会再属于我了
And that’s weird that finger will never go back.
每一天都是我在余生中最强壮的一天
Everyday is the strongest I will ever be again,
也是我目前为止最虚弱的一天
but also the weakest I’ve ever been.
这很奇怪 真的奇怪
That’s weird. It’s really weird.
音乐
[Music]
曾经最强的我
Strongest I’ll ever be
我的父母很年轻就生了我
I have young parents.
母亲十六岁生下我
My mom had me when she was 16 years old.
十五岁就生下我姐姐
And my sister, when she was 15 years old.
她首先自己要上课
She learned her lessons first.
同时也一直在工作
She was also working all the time.
因此 祖母照看我 姐姐和两个小叔叔
So my grandma was watching my sister, myself
我妈妈整天都在忙
and my two younger uncles. My mom’s working all day long.
我整天在街上玩滑板
I skateboard on the streets all day every day and then
回家后 我不做作业
I would… when I got home, I didn’t do my homework.
而是画漫画书上的图 那也只是我在乱画
I just drew pictures of comic books and it’s just random this…
我六年级时 祖母被送去医院
When I was in sixth grade my grandmother was taken to the hospital
做紧急气管切开术
and got an emergency tracheotomy.
她无法呼吸 然后我们发现她患有渐冻人症
And she couldn’t breathe and we found out that she had ALS.
渐冻人症是一种神经系统疾病
ALS is a neurological disease.
大脑向肌肉发送信号来控制肌肉
Your brain sends a signal to your muscles to move.
但患者的该信号逐渐消失
That signal dies away and
然后全身所有肌肉都会萎缩
your muscles atrophy, all your muscles, your entire body.
所有肌肉都受影响
There’s not a muscle that… that does not get affected.
目前无法根治 预后不良
There’s currently no cure, no treatment.
罹患此病大多活不过五年
Most people don’t live past five years.
就疾病本身来说 对每个患者都是致命的
That was devastating for everyone, on its own.
大约四五年后 母亲三十岁时也被诊断出渐冻人症
And then like four or five years later when my mom was diagnosed at 30 years old,
同时我的母亲还要照顾患病的祖母
my mom taking care of my grandma at the time, too.
天啊 我是说她们患了同样的病
Holy shit! I mean that was the same. You know,
你知道 当我看到祖母濒死 母亲又得了同样的病
your whole world goes crashing down when you see
我的整个世界都在崩塌
your grandmother dying and then your mom gets diagnosed the same disease.
我对这可怕的疾病已经见怪不怪了
This horrible disease became a normality for me.
在我从慕尼黑大学毕业后
And after I graduated college from LMU, I needed to
我更得回家帮忙照顾母亲
move back home to take help… take care
因为她更离不开人了
for more, because she was becoming more dependent.
照顾母亲时 婚纱摄像是我能同时做的唯一职业
Wedding photography was the only profession I could do while taking care of my mom at the time.
因为时间安排灵活
It was a really flexible schedule so that
以便工作日继父工作时 我能在家
when my stepdad was working, I could be at home during the weekdays.
周末则帮别人拍摄婚纱照 恋爱照 订婚照甚至私奔照
On the weekends I would photograph weddings and love and engagement sessions and elopement and…
这是最完美不过的事情了
it became the most perfect thing.
每年我会帮别人拍45到50次婚纱照
I was photographing 45-50 weddings a year.
当我感到自己有些虚弱时
And so I thought that I was
我以为是我超负荷了
feeling weak because I was overdoing it.
我以为我也许得了腕管综合征
I thought I had carpal tunnel. My hands were
因为双手出了问题 它们开始痉挛
becoming an issue because they were getting crampy.
有一次我早起为婚礼拍摄做准备
I photographed a wedding where in the morning
可我系不上自己衬衫的扣子
I had… I couldn’t button my shirt.
我的助理不仅要帮我调设备
I had to have my assistant
还要帮我穿衣服
not only helped me with my equipment but helped me get dressed.
我只管完成婚礼拍摄工作 “别想这件事 别想”
I was just photographing the wedding ,”don’t think about it, don’t think about it…”
婚礼结束后 我们想办法处理它 我们要找到原因
Well after this wedding is done, we’re going to address it, we’re going to figure it out.
今天一切都很好 都很好……
And this was good for today, this was good for today…
然而那天之后
and after the day
我预约了内科和神经科医生
I made my appointment with my physician and the neurologist.
结果被诊断出也是这该死的病 渐冻人症
And I was diagnosed with this shitty desease, called ALS.
那一年我有35场婚礼拍摄预约
I had 35 weddings booked that year.
我不得不告知所有新婚夫妇自己不能再工作了
And I told all those 35 brides that I could not photograph their wedding anymore.
我也放弃了摄影
And I gave up photography.
那是两年前的事儿了
That was two years ago.
以前我从未想过
It never crossed my mind that I would
自己会患上这种病
get this disease.
我觉得我的家庭已经遭遇太多了
I felt like our family has gone through so much
所以不可能也不公平让第三代人也遭遇
that it would be so unfair and impossible for me to also get this disease three generations in a row.
但我那时在照顾母亲
But I was taking care of my mom and
我那么年轻 只有26岁
I was only 26 years old and I was so young and
大多数人都不会得这种病
most people don’t get this disease.
这意味着他们的人生还很长
It turns out they’re a lot later in their… in their life.
我被诊断出渐冻人症时
When I was diagnosed
我陷入极度的沮丧中
I was incredibly depressed because
因为我觉得 你懂的 太不公平了
I thought you know this isn’t fair.
你知道的 我哭了 我从未想过 真的太不公平了
You know I just… that makes me cry, just even think about it’s not fair dude. Not fair…
我花了一些时间想这件事 但没什么结果
It took me some times… but it’s not, dude…
我们还在研究这种疾病 许多东西仍待发掘
We’re still understanding this disease, a lot is unknown.
以我为例 家族的基因变异导致渐冻人症
In my case we our family has a genetic mutation that’s responsible for this disease.
它是显性基因
And it’s a dominant gene.
健康的时候 我仍能做很多力所能及的事
I can still do most the things I could do when I was healthy.
只是会特别费力
It’s just that it takes an extraordinary amount of effort though.
我再不能把篮子提到胸前
So it’s like I can’t pull the blankets up to my chest anymore.
刷牙变得很难 不能穿衣服 也没法洗头 刮胡子
And I have just difficulty brushing my teeth, I can’t put my day robe on or brush my hair or shave.
所以妻子得帮我打理所有东西
So I have my wife help me with those things.
尽管生病了 妻子还是嫁给了我
My wife married me despite my illness.
很多人都不会这么做
And not many would.
实际上 她每天都向我保证
And the fact that she reassures me everyday that
无论如何都爱我
she loves me no matter what,
无论我的身体发生什么变化
no matter how much my body changes, and no matter
无论她得帮我多少
how much she has to help me,
她都会一直爱我 她是在安我的心
like she still loves me unconditionally.
她对我始终不离不弃
And that she’s not going anywhere,
她带给我的这份安心
that reassurance in in me, like, like…
让我不再心神难安
shuts down all my insecurities, that…
我不想让她经受这些 我不想让她
I don’t want her going through this. You know I don’t her to
处理那么多事情
do… have to do all this stuff and…
甚至是我每次有那种想法的萌芽时 她都会制止
She choose… every time I have even that kind of thoughts she shuts it down,
然后说有我在 不要再抱怨
and tells me I’m here, stop saying shit like that,
我不会离开你 我就在你身边 就在这 这样的话
and I’m not leaving. I’m right next to you, right here with you.
我们会一起哭出来 放声大哭
And we are gonna cry it out together. We cry it out and
然后 我们吃了些冰淇淋或者其他东西
then later on, let’s go get some… some ice-cream or something, you know,
然后她会做鬼脸逗我笑
and then she’ll make a silly face and make me laugh,
让我忘记所有烦恼
and make me forget about all my troubles, you know.
劳拉是一个特别的女人
Laarne is a special woman, and
她出现在我的生活里是不幸中的万幸
I’m so blessed to have her in my life.
简言之 这是我的恩赐
Super fortunate and blessing, in a word.
确诊后我放弃了摄影
After I was diagnosed I gave up photography, and
确诊一年半以后
then a year and a half after I was diagnosed, I missed
我非常怀念我的那些创意
my creative outlet so much.
摄影是我真正能享受的事
Photography was something that I’ve really really enjoyed.
所以我要想个办法继续拍摄
So I’m like “you know what I’m gonna figure this out.”
即使不能拿起相机我也要拍照
Even though I can’t carry a camera, I’m gonna take some pictures.
Jimmy帮我把相机固定在轮椅上
I mounted my camera to my wheelchair. Jimmy rigged it.
还有扬声器 外置电池 我重新开始了
I also have a speaker on here, external battery. I got a water pack.
在街上 我唯一要做的就是保护自己
Everything I need to be in the streets just survive essentially.
我又可以拍照了
And I can take photographs again, and
我找到了一个不管我感觉怎样
I can take photographs again, no matter I
不管病情发展到什么阶段
feel like I will figure out a way to take pictures
都能再次拍照的方式
no matter what stage of my disease is…
每一个健康的日子我都去拍照
I go out every healthy day and I take photographs with people
拍街上偶遇的人
in the streets that I encounter, and
我的轮椅打破了所有社交界限
my wheelchair removes all social boundaries.
人们不再回避我的相机
People are not intimidated by my camera anyone.
我可以拍下奇怪的作品 一些尴尬的瞬间
I photograph strange compositions,
人们不知道我是谁 他们在我面前脱掉了伪装
awkward moments, people that are just stripping out by me like they don’t understand who I am.
我认为这是一个非常友好的偶遇
I think it’s a super friendly encounter or I got the…
或者我会有“无视我 但我想看看你们在干嘛”的样子
like the side that “I don’t stare, I don’t stare, but I want to know what the heck is going on” like kind of look.
你必须要有创意 你会受到身体 技术的诸多限制
You have to get creative and you have all these limitations set upon you whether it’s physically and also technically too.
也因此会有一些有趣的构图
And so that’s brought up some interesting perspectives.
我的照片几乎都是仰视别人
You know almost all my photographs I’m looking up at people,
你问到的那些摄影师
and I’ve never… every, every photographer you ask,
你从没想过他们能仰拍某人
you’ve never want to photograph up on someone.
但是我的所有照片里 几乎都是人们俯视我
But almost all my pictures are people looking down at me.
如果你去看 我的照片看起来都像是在椅子里的视角
If you see my pictures it’s like from a perspective as if you’re in a chair.
因此你也会开始有点理解在椅子里是什么样的
And so you kind of like almost start to understand what it’s like to be in a chair, too.
照相和我偶遇的人都带给我很多
Photography brings so much to me and also others that I meet.
现在人们也在看着我工作
And now people that are also seeing my work, too – I’m not trying to…
我没有试图把我的作品弄的很宏大 那不美
that my work is insanely great. It’s not beautiful. My pictures are…
我认为我的照片并不漂亮
I don’t consider them pretty.
但是它们有质感 能让你体会些什么 这是我的希望
But they’re kind of gritty and they make you feel something, that’s my hope.
我不想它们是在墙上的完美照片
I don’t want a photograph that looks pretty on your wall. I want a
我希望你看到它们 能想到什么
photograph that you look at and you think about something,
或是想到什么 或是能意识到这些凝固的瞬间
or you feel something, or you realize them permanence of these moments.
我既感激此刻又感叹以后不能再拍 这很神奇
It’s amazing because I am appreciating this now, because I know that later on I may not be able to do it anymore.
这让我痛并快乐着
It makes it bittersweet.
它会让你以它为核心
Bittersweet, but like it makes you like focus on it like hardcore,
也让你每天都想哭
like it makes you want to cry every day.
为了生活中那些美好的瞬间
For like the beautiful moments in our moments, you know.
如果你让摄影师到街上 给陌生人拍张照
If you ask the photographer to go in the street and take a photograph of the stranger,
这很难 非常难
it is hard, it is incredibly difficult. And people are
当你举起相机时 人们立刻就会非常防备
very apprehensive as soon as you lift the camera up like this, and people get defensive.
但是因为我在轮椅里 看起来特别无辜
But because I’m in my wheelchair, I look super innocent.
他们甚至看不到我的相机 我从不曾把相机举到脸上
And they don’t… they barely even see my camera and I don’t ever lift this to my face.
所以并不吓人
So it’s not intimidating.
颇为神奇的是
It’s freaking cool that… that
这让我和街上的人交谈 可能这对他的生活没什么影响
this can start a conversation that might have a small impact on someone’s life on the street.
然后我可以记录下来 拍下来
And then I can hopefully document it and photograph it. And people can
人们也可以通过我的照片看他们的经历
also see that experience through my images.
那很酷 非常酷 这让我很兴奋
That’s cool, man. That’s so cool. That’s exciting for me.
真的让我非常兴奋 我感到我能够
It’s really exciting for me. I feel like, I can,
让我在轮椅里拍的照有不同的作用
I could really make a difference in my chair taking pictures,
做着我喜欢的事 这很酷
doing what I love, and that’s cool.
不管渐冻症带给我哪些改变
No matter where this disease brings me, it might be
我都会尽最大努力去抗争
my best to fight as hard as I can,
并尽可能让生命发光
and live my life as holy as possible.
这是我能做的一切
That’s all I can do.
为什么我们等生病了才能活的有意义呢 我不知道
Why do we wait to get sick to live a meaningful life? I don’t know.
我在我的视频里看到一条评论: 快死了是什么样的
I got a comment of my video: “what does it like to be dying?”
然后我想的是 “你来告诉我啊 兄弟”
You know and then I was like:”well you tell me, dude.”
还有 “你也快死了啊”
Like:”You are, too.
你不知道 我们不是快死了 我还活着 你也活着 对吗?
You don’t know that. We’re not just dying. I’m living. I’m living. Are you living, too?”
让我们有目标的活着 带着爱 正直和希望
Like let’s live with purpose and with love and integrity and like, you know, and
因此不管怎样 这个病神奇地赋予了我
so anyway, this disease has, in a weird way, has blessed me with this clarity of…
关于“此生短暂 我们应该珍惜每一秒
just this understanding of that “what this life is short and
因为时光不再回”
we got love every single setting moment
这样清晰的理解
because it’s not permanent.”
大家好 这里是Phil 我是这部短纪录片的导演
Hey everyone! Phil Ebiner here. I’m the director of the short documentary you just watched.
我和Anthony只是想说
With Anthony, and we just want to say thank you so much
非常感谢你们花时间聆听Anthony的故事
for taking the time to listen to Anthony’s story.
我们希望你能帮助让更多人了解ALS
And we hope that you can just spread a little bit more awareness about ALS.
随着这部影片在网上的初映
In conjunction with the premiere of this film online,
我们想合作开设摄影课程
we wanted to offer a photography class that we collaborated on.
如果你认为在简短的展示中 安东尼的照片很棒
If you thought anthony’s photos were awesome in the short doc,
它们的确很棒
which they are.
同时你想学习更多关于提升自己街拍效果的内容
And you want to learn a little bit more about how you can take your own amazing street photography.
我们会在下面提供我们合作的街拍课链接
We’ve included a link below to the street photography class that we’ve put together.
我们只是希望花一点时间
And yeah, we just wanted to take a little short minute to…
对不起 我的狗入画了
Sorry I have my dog in the frame.
如果计划可行 我认为我们可以尽快调整 重做
If we are allowed to go off of that I think we can transition to that real quick and redo it.
但是我想说 我只是想感谢Phil
But I wanted to say, I just want to quickly say thank you to Phil.
这个视频最初是Phil的想法
Phil… this is Phil’s idea from… from the start,
他是我的朋友
and you know he’s a friend of mine.
对我来说 面对镜头总会很尴尬
So, being in front of the camera is always really awkward for me,
操作相机就很轻松
being behind it’s always really easy.
但是 在镜头前虽然真的很尴尬
But being in front of it is always really awkward, but the fact that
但Phil让它变得很有个性
Phil..the fact that you were behind the camera really made it really personal.
也很容易打动我和分享我的故事
and really easy for me to be vulnerable and share my story.
所以我只是想说 谢谢你
So I just want to say thank you,
我也想对有渐冻症患者的其他家庭说
and I also wanna say to other families that are afflicted with this disease.
这说起来很难
It’s very difficult to talk about.
但是我认为保持开放 共享
But I think by being open and sharing and being vulnerable,
要示弱 也要允许别人这样做
you’re allowing others to be as well.
所以我认为这是我做这个视频的一个很大原因 即使这很难
So I think that was a big reason for me doing this video, even though it’s really difficult.
我认为它会有很大的影响力
I think that it can have a pretty big impact.
所以 你在看 感谢你的观看和分享
So, you are viewing this. Thank you for watching. Thank you for sharing.
跟上更新 关注Phil 关注我 可能在个人简介里有链接
And stay updated. Follow Phil, Follow I myself. Maybe there’s links in the bio…
耶 我会把你的网址放在下面Anthonycarbajal.com
Yeah, I will include some links below to your website: Anthonycarbajal.com
用ins关注他 你可以在其中
to your Instagram account, which is awesome, because you get to
欣赏安东尼的街拍作品
check out Anthony’s street photography work
他会几乎每天更新
and he updates it practically every day.
你可以经常访问videoschoolonline.com
And then you can always visit videoschoolonline.com to see
查看课程 和更多课程相关信息
the course, and more information about the course,
查看我的其他课程和我个人在做的一些事
and check out all of my other courses and the things that I’m doing personally.
谢谢 视频内容就是这些了
Thank you and I think that’s about it. – Yeah
我认为是的 感谢观看 谢谢
– I think that’s it. Thanks so much for watching.- Thank you.
请分享 点赞 订阅
And please share, like it, subscribe.

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译制信息
视频概述

安东尼,渐冻人症患者,摄影师。渐冻人症会使患者逐渐失去行动能力直至死亡,但安东尼如今却重拿相机,继续自己热爱的事业。希望本视频能给相似状况的家庭一些安慰。

听录译者

AF

翻译译者

岸雩

审核员

审核员 AF

视频来源

https://www.youtube.com/watch?v=GEM_clzwtEE

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