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我最后的日子│会见肖恩:尽可能充实地度过我的一生

Meet Shane, live life to the fullest | My Last Days

嘿 这里是心灵薄饼 我是肖恩·威尔逊 你们好吗
Hey, SoulPancakers, how you doing? Rainn Wilson here.
如你所知 周一通常是《形而上学在周一》栏目
As you know, mostly on Mondays, we have Metaphysical Mondays,
我们会邀请名人分享他们的想法和人生重大问题
we have celebrities sharing their thoughts and life’s big questions.
但是本期节目的嘉宾是与众不同的
But today is a different kind of celebrity,
本期非常特别 我想要给你们介绍
a very special event. I want you to meet
一位非常勇敢的 鼓舞人心的 了不起的年轻人
an extremely courageous, inspirational and kick-ass young man,
他叫肖恩·布尔考
named Shane Burcaw.
他非常疯狂 幽默
He is hysterical, he’s funny,
聪明 勇敢和令人惊叹
smart, brave, amazing and this
并且这个故事会深入人心 视频会有一点长
story is gonna blow your mind. The video is a little bit long,
所以要坚持看到最后哦
so stick with it to the end. You’ll be glad
你会很庆幸有这段经历的
that you took the journey.
让我们一起来认识一下肖恩·布尔考吧
Please meet Shane Burcaw.
第一次纹身吗?
First tattoo?
是的 第一次
It’s my first, yeah.
我一直想 在我小弟弟上 纹个大象
I always wanted…an elephant…on my penis.
你想的是 一个全身毛的猛犸象吗?
You want woolly…a woolly mammoth?
是的 长满毛的猛犸象
A woolly mammoth, yeah.
你准备好了吗?
You ready?
[电转声]
[electric sound]
是的 这就是了不起的肖恩
Alright, that’s awesome Shane.
这是我们最喜欢的乐队的符号
It’s the symbol of our favorite band.
哇 好酷啊
yeah, that’s cool.
棒极了 你是想就这么一直看着它吗?
That’s awesome. You just want to keep looking at it?
是的 就是一直这样盯着 太谢谢你了
Just forever, yes. Just stare at it. [laughter]Thank you so much.
-祝你晚上过得愉快 兄弟-你也是 哥们
-Have a great night, man.-You too, buddy.
[音乐]
[music]
我最后的日子
My Last Days
我叫肖恩·布尔考
My name is Shane Burcaw,
我患有脊肌萎缩症
and I have a disease called spinal muscular atrophy,
这个病是肌肉营养障碍疾病的一种
which is a form of muscle dystrophy
简单来说
that in basic terms,
随着年龄的增长 我的肌肉会逐渐衰退
causes my muscles to deteriorate as I get older.
大多数患我这种病的人
Most people with my disease,
基本寿命都在20到30岁左右
die sometime between like 20 and 30.
这是粗略的估计
It’s like a rough estimate.
我父母在我很小的时候就注意到了征兆
My parents noticed it when I was really young,
因为那时我的身体发育和其他小孩的不一样
because I wasn’t progressing physically the way other kids were.
当别的孩子开始学着爬行和取东西的时候
So when other kids were starting to crawl and reach for things,
我却乐得坐在一个地方并在那闲晃一整天
I was happy to sit in one spot and hung out there for the day.
【音乐】
#music#
很多事情我都需要靠别人帮助
I rely on other people to help me with pretty much anything,
从喝水到洗澡等事情
from picking things up to going to the bathroom,
这是任何一个健全的男孩
anything that an abled body person
都可以不假思索就做到的事情
does really without thinking about.
也就是说现在我身上的肌肉没有力气
What that means today is that all my muscles are extremely weak,
除了我的小弟弟
except for my penis. [laughing] Sorry,
不好意思 我忍不住笑
sorry, I had to. [laughing]
肖恩是 嗯
Shane is a…
是一个鼓舞人心的存在
is an inspiration,
他使我每天备受鼓舞
daily inspiration for me.
他很有趣 聪明 爱挖苦人 富有吸引力
Funny, intelligent, sarcastic, to the core, and a magnet. I envy him.
我很羡慕他的人际交往能力
You know, his capacity to make friends and
理解他人的能力
to understand people and…
对于他这个年龄的孩子 转变很不可思议
Institute change is incredible thing for a kid his age,
更何况他还身患残疾
let alone his disability.
你完全清楚
You’re utterly just clear.
[音乐]
[music]
纵使失去理智我也不会忘记那个时刻
If I lose my mind, I’ll remember that
从小儿神经科医生那拿到诊断结果的那刻
moment we had a diagnosis from a pediatric neurologists
医生告诉我们肖恩是脊髓性肌肉萎缩症
who said spinal muscular atrophy was his diagnosis.
其中的一个症状就是
One of the characteristics there is
肌肉神经突触之间没有电信号传导
no electrical activity fire across the muscle synapses.
我像所有父母一样问医生 “他还能走路吗?”
I asked like any parent would “Doc, is he…is he gonna ever walk?”
医生说 多半是不能了
and the doc said no, probably not.
我听到之后 脑子嗡嗡作响
And after that it was just kind of white noise.
那天晚上 哄肖恩睡着后
That evening, put Shane to sleep
这天的一点一滴在我们脑海里浮现开来
and the brevity of the day kinda came down on us.
那种感觉像是站在深渊的边缘
It was like standing on the edge of an abyss.
向下看 它就像能把你吸进去一样
And you could look down and let it suck you in
向上看 就会飞上去
or look up and rise above it.
我猜 你看到肖恩的样子
I think looking at Shane,
就会明白我们当时的选择
you can see what choice we made.
【音乐】
[music]
能帮忙把我的头推上去吗? 我需要帮助
Can someone push my head up? I need help.
后面那位 多谢
There’s someone in the back.Thank you.
我脖颈部位的肌肉真的没有力量
I have really weak neck muscles.
在快速启动和刹车时 我很难让头一直抬着
It’s difficult to hold my head up on like hills or like fast start and stop.
我无意中看到了他的博客
Found his blogs randomly and
然后决定给他发一份邮件
decided to email him.
我觉得我们在现实生活中会成为好朋友
Yeah, I just thought we would be good friends in real life.
所以我回了她邮件 美好就从那时开始
So yeah, I emailed her back and it’s been wonderful ever since.
【音乐】
[music]
我叫帕特·赫斯 是肖恩最好的朋友之一
I’m Patt Hess. I’m one of Shane’s best friends,
也是他最久的朋友之一
one of his longest friends.
我差不多每天都能见到他 同他讲话
Well, it’s rare when I don’t see him or talk to him every day.
我总是去学校看他
I always see him at school,
常常互发短信 到处闲逛 打国际足球联盟
we always text and try to hang out, play FIFA.
你是曼联队的 你要失去朋友了
You’re Manchester United? You’re falling friends.
混蛋 游戏结束 哈
Son of a bitch. Game over. Hah!
你被罚了一个点球
A penalty you have one shot, one shot.
我们幽默感几乎完全一样
We have the exact same sense of humor
在一起时心情总是很好
and can never be in a bad mood with each other.
总是非常开心
It’s just always a good laughing mood.
我是肖恩的表姐
I am Shane’s older cousin.
从来没有哪个时刻
There was never a point in time
父母会觉得肖恩是个累赘或之类的东西
when you know the parents were like Shane’s handicap or anything like that.
我们总让肖恩和我们一起做些事
We would always figure out a way to have Shane there and do stuff with us.
他也从不觉得自己有什么毛病
He never thought it as like, oh, there something wrong with me.
我不是正常的
I’m never going to be normal
因为我们不会让他这样觉得 因为他就是正常的
because we wouldn’t let him, because he was normal.
事实上他也是这样
He’s just like all of us in fact.
甚至可能比我们都要聪明
probably away more intelligent than all of us too.
我们在一起的时候 经常哈哈大笑
We laugh pretty much whenever we’re together.
开个玩笑或者只是谈到我们觉得有趣的
There’s a joke being cracked or just a reference being made that we find funny.
我们只把注意力放在找乐子方面的
We just like to focus on like having fun.
我们活在当下
The moment we’re in right now, focus on that.
之后我们再去解决我们的问题
Our problems, we’ll figure it out later.
我认为 你会发现我所有的朋友
I feel you’ll find with all of my friends
都非常善于开自己和对方的玩笑
that we’re all really good at making fun at each other and ourselves.
我们都有自嘲的能力
We all have that ability to laugh at ourselves,
这是你必须具备的一点
which is you have to have that, isn’t it?
我的幽默感很可能来自于我的父亲
I think my sense of humor probably came from my dad,
我这样说是因为我在生活中感受到
and the reason I say that is I’ve had it pretty much my whole life.
我的生活中有呼吸 性和笑声
Well, let’s see there’s breathing, sex and laughter,
不一定完全按照那个顺序
not necessarily in that order.
笑 是我生活的一部分
Laughing is a part of me.
我们家的一部分 笑笑我们自己
It’s a part of my family, laughing at ourselves,
笑笑对方 那是一天的一部分 伙计
laughing at each other. That’s just part of the day, man.
我们正是依赖它渡过难关
It’s ah…it’s what gets us through.
你会注意到 肖恩的笑容比其他人多的多
One thing you will notice that Shane gets more smiles than anyone else.
我想知道人们也常常对你笑吗
I was like do people always smile to you like this much?
你在公共场合
You’re out in public.
看看你 外出走动
Look at you, out and about.
伙计 伙计
Big boy, big boy.
我想对我而言 我在生理上输于他人的
I think in my case, what I’ve lost in like physical abilities,
我已经在才智上弥补
I’ve made up for in my wit.
听起来很自恋
That sounds so self loving.
呃 不管怎样 我真的 呃
Yeah, whatever, wait, I have been really just…
如果我面对我的生活和我的现状 没有幽默感
If I had to deal with my life and my situation, without humor,
我不会是现在的我
I would be in a very different place.
我听说过幽默是一种应对机制
I’ve heard before that humor is a coping mechanism.
有点像说
And it’s kinda said in like,
一种消极的自愈
a negative connotation.
你只是在应付
Oh, you are just coping.
没错它就是一种应对机制 可谁在乎呢
Yeah, it’s a coping mechanism, who cares.
他看待事物的态度很棒 不知怎么做到的
His look at everything is amazing. I don’t know how he does it.
我试着用相同态度 即便不是同一个层面
I try to have the same attitude even though its not even on close to the same level.
他看起来像从来没被什么事困扰
He never looks like something’s bothering him.
这很了不起
It’s, it’s amazing
说实话 我努力想做到他那样
And I just try to be like him, honestly.
【欢笑声】
[laughing]
最近我的下颌肌肉开始萎缩了
Recently, my jaw muscles have started getting a lot weaker.
因此咀嚼更困难了
So chewing is more difficult.
这就是为什么我不吃煎饼壳 它很难嚼
And that’s why I don’t like to eat, like the outside of the Burrito.
嚼一口我就要花二十分钟
Cause it’s chewy and I would spend like 20 minutes chewing one bite.
每个人的生活中都会有一部分真的很糟
Their part of everyone’s life that truly just blow,
重要的是你如何对待
and it’s about how you react to that,
这定义了你的生活质量
which defines the quality of your life.
我并不是用玩笑逃避生活中的坏事
I don’t use humor to avoid thinking about the bad stuff of life.
我用幽默来让不好的事看起来没那么糟
I use it to make the bad stuff less bad.
我不知道我会怎样
I don’t know what I would do without
如果没有我的家人和他们的支持
my family and the support system that they offer.
他们总是在我身旁
They’re all so much there for me,
在我很小的时候父母就教我
and from a very young age my parents taught me that
我的生活注定不同
yeah, your life is going to be different, you’re not going to have it.
不会像其他人那样轻松
As easy as some other people might,
但你的生命由你缔造
but life is what you make of it, and
你可以很开心 也可以很悲伤
you can be happy or you can be sad.
当你有了孩子 做你该做的事
You do what you gotta do when you have kids.
你把他们举过你的肩膀
You raise them above your shoulders.
对肖恩而言
And in Shane’s case, uh,
只是需要花费更多一点努力举起他
it just takes a little more lifting to get him up.
照顾他成为了我的第二个本能
Taking care of him basically just came second nature from like the day I was born.
我甚至不用思考我做的这件事
Like I don’t even think about doing this stuff I do anymore I kinda just comes.
永远把他放在第一位 然后再关心我自己
He comes first and then I’ll take care of myself
实际上我想都不用想 就会那样做
and I don’t really like think that. I just do that.
有两个了不起的孩子是我们的福气
We’re blessed with two amazing kids.
肖恩脑子灵光 安德鲁体能好
Shane is the brains and Andrew is the brawn.
他们两个是很棒的组合
The two of them together are an amazing pair.
我听到弟弟和妈妈曾经谈论过
I heard my brother and my mom talking once
安德鲁大学想学什么的问题
about what Andrew wanted to do for college.
安德鲁好像是这样说的
And Andrew said something like:”
真的 我不想离开家
well I really don’t want to go away,
因为我想留下来照顾肖恩
because I want to stay here and help out with Shane.”
我真的认为
I really thought that was more important than
那比做我想做的事 过我自己的生活重要
like doing what I want to do and like, go live my life.
这个决定当然不好做
And it was certainly a hard decision to make but
我知道这并不是说我就永远的离开了肖恩
I eventually came to the conclusion that it’s not like I’d be leaving forever.
我可以周末 假期回家
I can come home on holidays, weekends,
但它的确是我做出的最困难的决定之一
but it was certainly probably one of the hardest decisions I had to make.
我认为那很能说明我弟弟是怎样的一个人
And I think that says a lot about who my brother is.
好了 杰西 选那个 哈哈哈
Okay, Jessy, choose in there.
只要我还能对我所经历的事付诸一笑
As long as I have the ability to laugh at the shit that’s happening to me,
应付它们就容易得多
it’s a lot easier to deal with.
我永远不会说我不想走路之类的话
I’ll never say that like I wouldn’t want to walk,
假如有可能的话
if I had the hypothetical possibility,
我知道有些坐轮椅的人 可能会说不
I know there are some people who are in wheelchairs and say :”no,
轮椅是我的一部分 我不会放弃它
my wheel chairs are an apart of who I am and I wouldn’t give it up for anything else.”
我认为那有点像放屁
I think that’s kind of bullshit a little bit, because I would fucking love to
我很想走 跑 玩滑板
be able to walk and run and skateboard
冲浪 做很酷的事
and surf and do cool shit.
只要有能力做那些让我觉得自己活着的事
As long as…being able to do that didn’t change me as a person.
我是说我不会为了做那些放弃我的本性
I have wouldn’t give up who I am to do that.
我谅你也不敢在米凯拉身上跳大腿舞
I dare you to give Michaela a lap dance.
我的一些朋友在沙滩上建立了关系
Many in my friends take relationships in the beach
当他们沙滩浴时
when they were having a bath. I heard all the stories about how
听他们说怎么遇到琼斯小姐度过快乐时光
they met up with these girls they didn’t know and had a great time.
那是我永远都无法做的事
That’s something I’ve never been able to deal.
我永远不会 像是说 嘿我们去逛逛吧
I’d never have to be and be like hey what’s up we should hang out in the same way
像他们对待同龄的女性朋友的方式
that they would with my friends most girls my age.
别这样看着我
Don’t look at me and I’d
我不会活很久了
kind of, not be very long. And so,
但还是有机会和女孩子发展关系
any chance of way developing my relationship with them is going to stop there.
总有一天我会找到一个女孩
Someday I’m going to find a girl that doesn’t care
她不在乎我们一起面对的挑战
about the challenges that we’ll face together.
她会度过所有事情
And she will just make things through,
就像事情本该如此
as is all about really.
尽管别人认为肖恩做不了什么
While other things that
但肖恩实际上能做很多事
Shane can’t do, there’s a whole bunch of stuff that he can do.
两年前
Two years ago,
我开了个博客叫“嘲弄我的梦魇”
I started a blog called laughing at my nightmare.
我真的只想让那成为一个
I really only meant it to be a place where
能写一些我生活中的趣事的地方
I could write some of the funny stories that happened in my life,
仅为了让人开心 我发表了一些故事
just to make people laugh. I posted a few stories.
几天后我就有一百个粉丝了
A couple days later, I had like a hundred followers every time.
渐渐我的博客成为了我
My blog kind of evolved into this place where I document
记录身体残疾给我生活带来的不同的地方
everything that’s different about my life because of my disability,
同时也是记录我生活中正常之处的地方
but also everything that’s normal about my life.
现如今我已经拥有超过17万的粉丝了
And today I have over 170,000followers.
因为我讲述了一些有趣的故事
All because I told some funny stories.
他通过学到的东西
Stuff that he’s learned
成为博客中的一员
by being a part of this huge blog community.
令人难以置信 我以前不知道博客是什么
It’s just absolutely incredible. Hell, I don’t even know what a blog was
当他开始写博客时 我希望
when he started blogging. I hope that
他能有十亿个粉丝
he reaches a billion people.
肖恩起初意识到他能用博客来做些什么
Shane recognized first that he really had the ability to do something with it,
后来便发展成了怎样创造一个无盈利组织
and when it came down to what’s creating a non-profit. What the nonprofit is
为肌肉萎缩症研究募捐 组织氛围积极
raising money for muscular dystrophy research, we promote a massive positivity,
靠分享幽默的消息和向大家展示
with the simple message of laugh and show how it’s possible
怎样活出你从未想象过的生活的
to live your life in a way that you may have not thought of doing before.
【音乐】
[Music]
父爱对于孩子来说是什么
What is a father’s love for his son?
它重在欢笑 这是永恒的
More important in laughing, it’s infinite.
他的真实情况是
The reality of his situation is that
他的疾病不允许他拥有一个完美的生活
his disease isn’t allowing him to live out a full life and
那对我来说不公平
it’s not fair to me,
但那也不可能会有一个圆满 快乐的结局
but it’s most likely not gonna be a good, happy ending here.
我不去想它
I don’t think about it,
因为我不能
’cause I can’t.
起码生理上不能
I can’t physically do it.
我思考的最多的时候是晚上躺在床上时
The most I think about that is when I’m like in bed at night,
如果我开始思考的话 我有时会去想这事
if my mind starts like running.Sometimes I think about it but then
但这让我突然明白只要尽你所能
it’ll just like hit me his whole message like just
活出你最丰富的人生
take what you have in and live it to the fullest.
未来我的身体状况会更差
In the future I’m going to be physically worse off than I am now
我总是会做可怕的噩梦
and I have this recurring feared nightmare if you will.
30年后 我的家人坐在一起吃圣诞晚餐
Where my family is sitting down to like eat Christmas dinner in like 30 years
但我却不在那儿
and I’m not there.
我想那应该是一个很大的酒店
I think that is,the most of the whole time.
我不是哼 之前转转眼睛
I’m not huh, just well in your eyes.
[笑]
[laughing]
对比明显 不是吗?
Very contrasting, aren’t they?
怎么啦?
Eyes watering, what’s happening?
——我眼睛里有太阳——没错
-I have the sun in my eyes.-That’s true
那个孩子有世界上所有的理由
That kid has every reason in the world
每天早上醒来憎恨他该死的人生
to wake up every morning fuckin hating his life,
但要命的是
but god damn it.
他比世界上任何人都恨得少
He hates it like the least out of anybody in the world.
把每一天当成最后一天来过 陈词滥调了
My future inspires me to treat every day like it’s my last.That’ a cliche.
张开手臂 快来
On your arms. Get it. Go.
随着
As far as
时间的推移
time left there’s too much time to go.
依我来看 细想它
Dwelling on that, in my opinion,
让他打败你 只是没时间了
is letting it beat you, there’s just no time for that.
我说过
I think that
这个世界
the world and
人和宇宙在一起 犹豫不前
the people in it and the universe is just so mind bogglingly amazing,
是浪费时间
that something has to be up, like
不是科学法则
it’s not just the laws of science.
无论如何 我不能说我坚信上帝
However, I can’t also say that I
我只是把我的生活过成一种 呃
firmly believe in God. I just put in my life it’s kind of like…
我依然会问 我不相信一个或者其他答案
I’m still asking questions. I don’t firmly believe one way or another.
我相信上帝
I believe in God and I believe that
也信天堂是个棒球场
heaven is a baseball field where Shane
在那里肖恩跑着接球 和安德鲁一起玩耍
is running, catching the ball, playingwith Andrew.
我相信天堂是肆无忌惮的爱
I believe that heaven is unconscionable love.
我爱他到死
l love him to death.
我不想过一天没有肖恩的日子
I don’t wanna go a day without Shane.
我只是他以积极的方式改变的人中的一个
I’m just one of the few victims that he has changed in a very positive way.
他确实了不起
He is just amazing and
我很幸运能遇到他
so honored and blessed even have met him.
还有什么你没跟你兄弟说过的 但是想告诉他的?
Is there anything you haven’t said to your brother that you would want to tell him?
谢谢你让我成为今天的我
Thank you for making me a person I am today.
时间很珍贵
Think time.
但人们没有意识到自己的时间是多么少
It’s such an important thing that people don’t realize how, how little of it that
我们确切拥有的时间和人是不多的
we actually have and somebody who has such a limited amount of time.
他可能 可能像这样
He can, he can be like this.
就像你能做 你能在生活中做什么
It’s like what can you do, what can you really do in your life.
每个人生活中都会遇到问题 有大有小
We all have problems in life some of them are big, some of them are small,
但是你生活的质量
but quality of your life
其实取决于你如何面对这些问题
is really depending upon how you react to those problems.
所以我的梦想就是尽可能地多接触一些人
And so my dream is to reach as many people as possible
和他们一起大笑 告诉他们我的生活方式
and to laugh with them and to teach as many people the way that I live my life.
你应该花时间去自嘲以及嘲笑你的问题
You should just really take time to laugh at yourself and your problems
以及你周围世界的疯狂
and the craziness in the world around you,
你会开心很多
you’re gonna have a better time.
当你面对一些事情的时候 时间在你这边
I think when it comes down to it, life is about having a good time.
所以 好好利用它吧
So, use that.
我最后的日子
My Last Days

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译制信息
视频概述

肖恩·威尔逊身患脊髓肌萎缩,从2岁开始,他就坐上了轮椅,但他依然乐观的生活,即使医生说他会在20到30岁之间死去

听录译者

Amy

翻译译者

林邑

审核员

YX

视频来源

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

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