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.
As you know, mostly on Mondays, we have Metaphysical Mondays,
we have celebrities sharing their thoughts and life’s big questions.
But today is a different kind of celebrity,
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,
named Shane Burcaw.
He is hysterical, he’s funny,
smart, brave, amazing and this
story is gonna blow your mind. The video is a little bit long,
so stick with it to the end. You’ll be glad
that you took the journey.
Please meet Shane Burcaw.
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.
You want woolly…a woolly mammoth?
A woolly mammoth, yeah.
Alright, that’s awesome Shane.
It’s the symbol of our favorite band.
yeah, that’s cool.
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.
My Last Days
My name is Shane Burcaw,
and I have a disease called spinal muscular atrophy,
which is a form of muscle dystrophy
that in basic terms,
causes my muscles to deteriorate as I get older.
Most people with my disease,
die sometime between like 20 and 30.
It’s like a rough estimate.
My parents noticed it when I was really young,
because I wasn’t progressing physically the way other kids were.
So when other kids were starting to crawl and reach for things,
I was happy to sit in one spot and hung out there for the day.
I rely on other people to help me with pretty much anything,
from picking things up to going to the bathroom,
anything that an abled body person
does really without thinking about.
What that means today is that all my muscles are extremely weak,
except for my penis. [laughing] Sorry,
sorry, I had to. [laughing]
Shane is a…
is an inspiration,
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.
You know, his capacity to make friends and
to understand people and…
Institute change is incredible thing for a kid his age,
let alone his disability.
You’re utterly just clear.
If I lose my mind, I’ll remember that
moment we had a diagnosis from a pediatric neurologists
who said spinal muscular atrophy was his diagnosis.
One of the characteristics there is
no electrical activity fire across the muscle synapses.
I asked like any parent would “Doc, is he…is he gonna ever walk?”
and the doc said no, probably not.
And after that it was just kind of white noise.
That evening, put Shane to sleep
and the brevity of the day kinda came down on us.
It was like standing on the edge of an abyss.
And you could look down and let it suck you in
or look up and rise above it.
I think looking at Shane,
you can see what choice we made.
Can someone push my head up? I need help.
There’s someone in the back.Thank you.
I have really weak neck muscles.
It’s difficult to hold my head up on like hills or like fast start and stop.
Found his blogs randomly and
decided to email him.
Yeah, I just thought we would be good friends in real life.
So yeah, I emailed her back and it’s been wonderful ever since.
I’m Patt Hess. I’m one of Shane’s best friends,
one of his longest friends.
Well, it’s rare when I don’t see him or talk to him every day.
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.
You’re Manchester United? You’re falling friends.
混蛋 游戏结束 哈
Son of a bitch. Game over. Hah!
A penalty you have one shot, one shot.
We have the exact same sense of humor
and can never be in a bad mood with each other.
It’s just always a good laughing mood.
I am Shane’s older cousin.
There was never a point in time
when you know the parents were like Shane’s handicap or anything like that.
We would always figure out a way to have Shane there and do stuff with us.
He never thought it as like, oh, there something wrong with me.
I’m never going to be normal
because we wouldn’t let him, because he was normal.
He’s just like all of us in fact.
probably away more intelligent than all of us too.
We laugh pretty much whenever we’re together.
There’s a joke being cracked or just a reference being made that we find funny.
We just like to focus on like having fun.
The moment we’re in right now, focus on that.
Our problems, we’ll figure it out later.
I feel you’ll find with all of my friends
that we’re all really good at making fun at each other and ourselves.
We all have that ability to laugh at ourselves,
which is you have to have that, isn’t it?
I think my sense of humor probably came from my dad,
and the reason I say that is I’ve had it pretty much my whole life.
Well, let’s see there’s breathing, sex and laughter,
not necessarily in that order.
Laughing is a part of me.
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.
It’s ah…it’s what gets us through.
One thing you will notice that Shane gets more smiles than anyone else.
I was like do people always smile to you like this much?
You’re out in public.
Look at you, out and about.
Big boy, big boy.
I think in my case, what I’ve lost in like physical abilities,
I’ve made up for in my wit.
That sounds so self loving.
呃 不管怎样 我真的 呃
Yeah, whatever, wait, I have been really just…
If I had to deal with my life and my situation, without humor,
I would be in a very different place.
I’ve heard before that humor is a coping mechanism.
And it’s kinda said in like,
a negative connotation.
Oh, you are just coping.
Yeah, it’s a coping mechanism, who cares.
His look at everything is amazing. I don’t know how he does it.
I try to have the same attitude even though its not even on close to the same level.
He never looks like something’s bothering him.
It’s, it’s amazing
And I just try to be like him, honestly.
Recently, my jaw muscles have started getting a lot weaker.
So chewing is more difficult.
And that’s why I don’t like to eat, like the outside of the Burrito.
Cause it’s chewy and I would spend like 20 minutes chewing one bite.
Their part of everyone’s life that truly just blow,
and it’s about how you react to that,
which defines the quality of your life.
I don’t use humor to avoid thinking about the bad stuff of life.
I use it to make the bad stuff less bad.
I don’t know what I would do without
my family and the support system that they offer.
They’re all so much there for me,
and from a very young age my parents taught me that
yeah, your life is going to be different, you’re not going to have it.
As easy as some other people might,
but life is what you make of it, and
you can be happy or you can be sad.
You do what you gotta do when you have kids.
You raise them above your shoulders.
And in Shane’s case, uh,
it just takes a little more lifting to get him up.
Taking care of him basically just came second nature from like the day I was born.
Like I don’t even think about doing this stuff I do anymore I kinda just comes.
He comes first and then I’ll take care of myself
and I don’t really like think that. I just do that.
We’re blessed with two amazing kids.
Shane is the brains and Andrew is the brawn.
The two of them together are an amazing pair.
I heard my brother and my mom talking once
about what Andrew wanted to do for college.
And Andrew said something like:”
well I really don’t want to go away,
because I want to stay here and help out with Shane.”
I really thought that was more important than
like doing what I want to do and like, go live my life.
And it was certainly a hard decision to make but
I eventually came to the conclusion that it’s not like I’d be leaving forever.
I can come home on holidays, weekends,
but it was certainly probably one of the hardest decisions I had to make.
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.
As long as I have the ability to laugh at the shit that’s happening to me,
it’s a lot easier to deal with.
I’ll never say that like I wouldn’t want to walk,
if I had the hypothetical possibility,
I know there are some people who are in wheelchairs and say :”no,
my wheel chairs are an apart of who I am and I wouldn’t give it up for anything else.”
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
and surf and do cool shit.
As long as…being able to do that didn’t change me as a person.
I have wouldn’t give up who I am to do that.
I dare you to give Michaela a lap dance.
Many in my friends take relationships in the beach
when they were having a bath. I heard all the stories about how
they met up with these girls they didn’t know and had a great time.
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
that they would with my friends most girls my age.
Don’t look at me and I’d
kind of, not be very long. And so,
any chance of way developing my relationship with them is going to stop there.
Someday I’m going to find a girl that doesn’t care
about the challenges that we’ll face together.
And she will just make things through,
as is all about really.
While other things that
Shane can’t do, there’s a whole bunch of stuff that he can do.
Two years ago,
I started a blog called laughing at my nightmare.
I really only meant it to be a place where
I could write some of the funny stories that happened in my life,
just to make people laugh. I posted a few stories.
A couple days later, I had like a hundred followers every time.
My blog kind of evolved into this place where I document
everything that’s different about my life because of my disability,
but also everything that’s normal about my life.
And today I have over 170,000followers.
All because I told some funny stories.
Stuff that he’s learned
by being a part of this huge blog community.
It’s just absolutely incredible. Hell, I don’t even know what a blog was
when he started blogging. I hope that
he reaches a billion people.
Shane recognized first that he really had the ability to do something with it,
and when it came down to what’s creating a non-profit. What the nonprofit is
raising money for muscular dystrophy research, we promote a massive positivity,
with the simple message of laugh and show how it’s possible
to live your life in a way that you may have not thought of doing before.
What is a father’s love for his son?
More important in laughing, it’s infinite.
The reality of his situation is that
his disease isn’t allowing him to live out a full life and
it’s not fair to me,
but it’s most likely not gonna be a good, happy ending here.
I don’t think about it,
’cause I can’t.
I can’t physically do it.
The most I think about that is when I’m like in bed at night,
if my mind starts like running.Sometimes I think about it but then
it’ll just like hit me his whole message like just
take what you have in and live it to the fullest.
In the future I’m going to be physically worse off than I am now
and I have this recurring feared nightmare if you will.
Where my family is sitting down to like eat Christmas dinner in like 30 years
and I’m not there.
I think that is,the most of the whole time.
I’m not huh, just well in your eyes.
Very contrasting, aren’t they?
Eyes watering, what’s happening?
-I have the sun in my eyes.-That’s true
That kid has every reason in the world
to wake up every morning fuckin hating his life,
but god damn it.
He hates it like the least out of anybody in the world.
My future inspires me to treat every day like it’s my last.That’ a cliche.
On your arms. Get it. Go.
As far as
time left there’s too much time to go.
Dwelling on that, in my opinion,
is letting it beat you, there’s just no time for that.
I think that
the world and
the people in it and the universe is just so mind bogglingly amazing,
that something has to be up, like
it’s not just the laws of science.
However, I can’t also say that I
firmly believe in God. I just put in my life it’s kind of like…
I’m still asking questions. I don’t firmly believe one way or another.
I believe in God and I believe that
heaven is a baseball field where Shane
is running, catching the ball, playingwith Andrew.
I believe that heaven is unconscionable love.
l love him to death.
I don’t wanna go a day without Shane.
I’m just one of the few victims that he has changed in a very positive way.
He is just amazing and
so honored and blessed even have met him.
Is there anything you haven’t said to your brother that you would want to tell him?
Thank you for making me a person I am today.
It’s such an important thing that people don’t realize how, how little of it that
we actually have and somebody who has such a limited amount of time.
He can, he can be like this.
It’s like what can you do, what can you really do in your life.
We all have problems in life some of them are big, some of them are small,
but quality of your life
is really depending upon how you react to those problems.
And so my dream is to reach as many people as possible
and to laugh with them and to teach as many people the way that I live my life.
You should just really take time to laugh at yourself and your problems
and the craziness in the world around you,
you’re gonna have a better time.
I think when it comes down to it, life is about having a good time.
So, use that.
My Last Days
嘿 这里是心灵薄饼 我是肖恩·威尔逊 你们好吗