My abilities are slowly diminishing.
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
and I realize I couldn’t hold this finger anymore.
Just like that… that one was gone.
And that’s weird that finger will never go back.
Everyday is the strongest I will ever be again,
but also the weakest I’ve ever been.
That’s weird. It’s really weird.
Strongest I’ll ever be
I have young parents.
My mom had me when she was 16 years old.
And my sister, when she was 15 years old.
She learned her lessons first.
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
and my two younger uncles. My mom’s working all day long.
I skateboard on the streets all day every day and then
I would… when I got home, I didn’t do my homework.
I just drew pictures of comic books and it’s just random this…
When I was in sixth grade my grandmother was taken to the hospital
and got an emergency tracheotomy.
And she couldn’t breathe and we found out that she had ALS.
ALS is a neurological disease.
Your brain sends a signal to your muscles to move.
That signal dies away and
your muscles atrophy, all your muscles, your entire body.
There’s not a muscle that… that does not get affected.
There’s currently no cure, no treatment.
Most people don’t live past five years.
That was devastating for everyone, on its own.
And then like four or five years later when my mom was diagnosed at 30 years old,
my mom taking care of my grandma at the time, too.
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
your grandmother dying and then your mom gets diagnosed the same disease.
This horrible disease became a normality for me.
And after I graduated college from LMU, I needed to
move back home to take help… take care
for more, because she was becoming more dependent.
Wedding photography was the only profession I could do while taking care of my mom at the time.
It was a really flexible schedule so that
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…
it became the most perfect thing.
I was photographing 45-50 weddings a year.
And so I thought that I was
feeling weak because I was overdoing it.
I thought I had carpal tunnel. My hands were
becoming an issue because they were getting crampy.
I photographed a wedding where in the morning
I had… I couldn’t button my shirt.
I had to have my assistant
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.
And this was good for today, this was good for today…
and after the day
I made my appointment with my physician and the neurologist.
And I was diagnosed with this shitty desease, called ALS.
I had 35 weddings booked that year.
And I told all those 35 brides that I could not photograph their wedding anymore.
And I gave up photography.
That was two years ago.
It never crossed my mind that I would
get this disease.
I felt like our family has gone through so much
that it would be so unfair and impossible for me to also get this disease three generations in a row.
But I was taking care of my mom and
I was only 26 years old and I was so young and
most people don’t get this disease.
It turns out they’re a lot later in their… in their life.
When I was diagnosed
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…
It took me some times… but it’s not, dude…
We’re still understanding this disease, a lot is unknown.
In my case we our family has a genetic mutation that’s responsible for this disease.
And it’s a dominant gene.
I can still do most the things I could do when I was healthy.
It’s just that it takes an extraordinary amount of effort though.
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.
So I have my wife help me with those things.
My wife married me despite my illness.
And not many would.
And the fact that she reassures me everyday that
she loves me no matter what,
no matter how much my body changes, and no matter
how much she has to help me,
like she still loves me unconditionally.
And that she’s not going anywhere,
that reassurance in in me, like, like…
shuts down all my insecurities, that…
I don’t want her going through this. You know I don’t her to
do… have to do all this stuff and…
She choose… every time I have even that kind of thoughts she shuts it down,
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.
And we are gonna cry it out together. We cry it out and
then later on, let’s go get some… some ice-cream or something, you know,
and then she’ll make a silly face and make me laugh,
and make me forget about all my troubles, you know.
Laarne is a special woman, and
I’m so blessed to have her in my life.
Super fortunate and blessing, in a word.
After I was diagnosed I gave up photography, and
then a year and a half after I was diagnosed, I missed
my creative outlet so much.
Photography was something that I’ve really really enjoyed.
So I’m like “you know what I’m gonna figure this out.”
Even though I can’t carry a camera, I’m gonna take some pictures.
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.
Everything I need to be in the streets just survive essentially.
And I can take photographs again, and
I can take photographs again, no matter I
feel like I will figure out a way to take pictures
no matter what stage of my disease is…
I go out every healthy day and I take photographs with people
in the streets that I encounter, and
my wheelchair removes all social boundaries.
People are not intimidated by my camera anyone.
I photograph strange compositions,
awkward moments, people that are just stripping out by me like they don’t understand who I am.
I think it’s a super friendly encounter or I got the…
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.
And so that’s brought up some interesting perspectives.
You know almost all my photographs I’m looking up at people,
and I’ve never… every, every photographer you ask,
you’ve never want to photograph up on someone.
But almost all my pictures are people looking down at me.
If you see my pictures it’s like from a perspective as if you’re in a chair.
And so you kind of like almost start to understand what it’s like to be in a chair, too.
Photography brings so much to me and also others that I meet.
And now people that are also seeing my work, too – I’m not trying to…
that my work is insanely great. It’s not beautiful. My pictures are…
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.
I don’t want a photograph that looks pretty on your wall. I want a
photograph that you look at and you think about something,
or you feel something, or you realize them permanence of these moments.
It’s amazing because I am appreciating this now, because I know that later on I may not be able to do it anymore.
It makes it bittersweet.
Bittersweet, but like it makes you like focus on it like hardcore,
like it makes you want to cry every day.
For like the beautiful moments in our moments, you know.
If you ask the photographer to go in the street and take a photograph of the stranger,
it is hard, it is incredibly difficult. And people are
very apprehensive as soon as you lift the camera up like this, and people get defensive.
But because I’m in my wheelchair, I look super innocent.
And they don’t… they barely even see my camera and I don’t ever lift this to my face.
So it’s not intimidating.
It’s freaking cool that… that
this can start a conversation that might have a small impact on someone’s life on the street.
And then I can hopefully document it and photograph it. And people can
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.
It’s really exciting for me. I feel like, I can,
I could really make a difference in my chair taking pictures,
doing what I love, and that’s cool.
No matter where this disease brings me, it might be
my best to fight as hard as I can,
and live my life as holy as possible.
That’s all I can do.
Why do we wait to get sick to live a meaningful life? I don’t know.
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.”
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
so anyway, this disease has, in a weird way, has blessed me with this clarity of…
just this understanding of that “what this life is short and
we got love every single setting moment
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.
With Anthony, and we just want to say thank you so much
for taking the time to listen to Anthony’s story.
And we hope that you can just spread a little bit more awareness about ALS.
In conjunction with the premiere of this film online,
we wanted to offer a photography class that we collaborated on.
If you thought anthony’s photos were awesome in the short doc,
which they are.
And you want to learn a little bit more about how you can take your own amazing street photography.
We’ve included a link below to the street photography class that we’ve put together.
And yeah, we just wanted to take a little short minute to…
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.
But I wanted to say, I just want to quickly say thank you to Phil.
Phil… this is Phil’s idea from… from the start,
and you know he’s a friend of mine.
So, being in front of the camera is always really awkward for me,
being behind it’s always really easy.
But being in front of it is always really awkward, but the fact that
Phil..the fact that you were behind the camera really made it really personal.
and really easy for me to be vulnerable and share my story.
So I just want to say thank you,
and I also wanna say to other families that are afflicted with this disease.
It’s very difficult to talk about.
But I think by being open and sharing and being vulnerable,
you’re allowing others to be as well.
So I think that was a big reason for me doing this video, even though it’s really difficult.
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…
Yeah, I will include some links below to your website: Anthonycarbajal.com
to your Instagram account, which is awesome, because you get to
check out Anthony’s street photography work
and he updates it practically every day.
And then you can always visit videoschoolonline.com to see
the course, and more information about the course,
and check out all of my other courses and the things that I’m doing personally.
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.