TEDxCambridge
Tony Luciani: A mother and son's photographic journey through dementia
托尼.卢西亚尼: 影.像 - 伴随母亲失智的时光
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在艺术家托尼.卢西亚尼测试新相机时，93岁的老母亲埃利亚悄悄闯入了背景。这偶然的一幕让他们开启了一年的合作 - 卢西亚尼开始记载有失智症的母亲的精神和生活。在这段感人的谈话里，他分享了一些他们最喜爱的照片背后的故事，照片捕获了照料老母亲过程中的悲伤和喜悦。
Tony Luciani - Artist
Tony Luciani picked up a camera in 2014 to document his aging mom's struggle with dementia, beginning a four-year-long voyage of discovery. Full bio
Tony Luciani picked up a camera in 2014 to document his aging mom's struggle with dementia, beginning a four-year-long voyage of discovery. Full bio
Double-click the English transcript below to play the video.
00:13
When my 91-year-old mother, Elia,
moved in with me,
moved in with me,
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当91岁的老母亲埃利亚
搬来和我住一起的时候，
搬来和我住一起的时候，
00:17
I thought I was doing her a service.
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我想我是在帮助她。
00:20
In fact, it was the other way around.
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实际上，情况刚好相反。
00:23
You see, Mom was having issues
with memory loss and accepting her age.
with memory loss and accepting her age.
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当时，母亲有记忆力衰退的
问题，但她不认老。
问题，但她不认老。
00:29
She looked defeated.
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她看上去情绪低落。
00:31
I tried to make her
as comfortable as possible,
as comfortable as possible,
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我想尽量让她感觉舒服一些，
00:35
but when I was at my easel, painting,
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但是，当我在画板前画画时，
00:37
I would peek over
and see her just ... there.
and see her just ... there.
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转眼看看，她就在...那里。
00:41
She'd be staring at nothing in particular.
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她两眼茫然地看着。
00:45
I'd watch her slowly climb the stairs,
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我看着她慢慢走上楼梯，
00:49
and she wasn't the mom I grew up with.
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母亲已经不是从前的样子了。
00:52
I saw, instead, a frail,
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我看到的是一个羸弱，
00:55
tiny, old woman.
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瘦小的老妇。
01:01
A few weeks went by,
and I needed a break from my painting.
and I needed a break from my painting.
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过了几个星期以后，
我想暂停一下绘画。
我想暂停一下绘画。
01:04
I wanted to play with the new camera
I had just bought.
I had just bought.
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我想玩玩新买的相机。
01:07
I was excited --
it had all sorts of dials,
it had all sorts of dials,
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我很兴奋 - 相机上的各种表盘
01:10
buttons and settings I wanted to learn,
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按钮和设置我都想学学，
01:13
so I set up my tripod
facing this large mirror,
facing this large mirror,
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我装起三角架，正
对着那面大镜子，
对着那面大镜子，
01:18
blocking the doorway
to the only bathroom in the house.
to the only bathroom in the house.
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挡住了通向房子唯一厕所的过道。
01:23
(Laughter)
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（笑声）
01:25
After a while, I hear,
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过了一会儿，我听到，
01:29
(Imitating Italian accent)
"I need to use the washroom."
"I need to use the washroom."
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（模拟意大利口音）“我要上洗手间。”
01:31
(Laughter)
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（笑声）
01:32
"Five minutes, Mom. I need to do this."
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“就等五分钟。我要做完它。”
01:36
15 minutes later, and I hear, again,
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15分钟以后，我又听到，
01:42
"I need to use the washroom."
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“我需要上洗手间。”
01:45
"Five more minutes."
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“再等5分钟。”
01:47
Then this happened.
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然后出现了这个画面。
01:53
(Laughter)
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（笑声）
01:57
(Applause)
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（掌声）
02:05
And this.
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然后是这个。
02:09
(Laughter)
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（笑声）
02:14
And then, this.
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再是这个。
02:19
(Laughter)
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（笑声）
02:25
I had my "aha!" moment.
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我来灵感了！
02:29
We connected.
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我们灵犀相通了。
02:30
We had something tangible
we could do together.
we could do together.
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我们有些具体事情可以一起做了。
02:36
My mom was born in a small
mountain village in central Italy,
mountain village in central Italy,
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母亲出生于意大利中部的
一个小山村，
一个小山村，
02:41
where her parents had land and sheep.
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他的父母有土地和羊只。
02:44
At a young age,
her father died of pneumonia,
her father died of pneumonia,
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她年纪很小的时候，
父亲因为肺炎去世，
父亲因为肺炎去世，
02:47
leaving his wife and two daughters alone
with all the heavy chores.
with all the heavy chores.
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留下他的妻子和两个女儿，
和家里很多的重活。
和家里很多的重活。
02:53
They found that they couldn't cope.
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她们发现自己应付不来。
02:56
So a very hard decision was made.
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只好做出了一个艰难的决定。
02:59
Mom, the oldest, at 13,
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我母亲，长女，才13岁，
03:02
was married off to a complete
stranger twice her age.
stranger twice her age.
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被迫嫁给大她一倍的一个陌生人。
03:08
She went from being just a kid
and was pushed into adulthood.
and was pushed into adulthood.
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她从一个孩子，
被迫一下长大成人了。
被迫一下长大成人了。
03:14
Mom had her first child
when she was only 16.
when she was only 16.
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母亲16岁时就生下第一个孩子。
03:20
Years later, and now living in Toronto,
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多年以后，这时，
母亲住在多伦多，
母亲住在多伦多，
03:23
Mom got work in a clothing factory
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她找到一个服装厂的工作
03:26
and soon became manager
of a very large sewing department.
of a very large sewing department.
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不久，她当上一个大的缝纫部门的经理。
03:31
And because it was full
of immigrant workers,
of immigrant workers,
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因为厂里多是移民员工，
03:34
Mom taught herself words
from translation books.
from translation books.
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母亲就从翻译书本里
自学一些单词。
自学一些单词。
03:38
She then practiced them in French,
Greek, Spanish, Portuguese, Danish,
Greek, Spanish, Portuguese, Danish,
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然后，她练习说法语，希腊语，
西班牙语，葡萄牙语，丹麦语，
西班牙语，葡萄牙语，丹麦语，
03:42
Polish, Russian, Romanian, Hungarian,
all around the house.
all around the house.
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波兰语，俄语，罗马尼亚语和
匈牙利语，在房间里练习。
匈牙利语，在房间里练习。
03:47
I was in awe of her focus
and determination to succeed
and determination to succeed
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我非常敬佩她的专注力
和争取成功的决心
和争取成功的决心
03:53
at whatever she loved to do.
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对于任何她喜欢做的事情。
03:56
After that bathroom "aha!" moment,
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从那次上厕所的 “灵感” 时刻，
03:59
I practiced my newfound camera skills
with Mom as portrait model.
with Mom as portrait model.
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我开始以母亲为模特，
练习新的摄影技巧。
练习新的摄影技巧。
04:05
Through all of this,
she talked, and I listened.
she talked, and I listened.
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在整个过程中，她会说话，
我会去聆听。
我会去聆听。
04:08
She'd tell me about her early childhood
and how she was feeling now.
and how she was feeling now.
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她会讲她小时候的故事
和她现在的感觉。
和她现在的感觉。
04:13
We had each other's attention.
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我们彼此相互关注。
04:17
Mom was losing her short-term memory,
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母亲正逐渐失去短期记忆，
04:19
but was better recalling
her younger years.
her younger years.
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但小时候的事会记得清楚些。
04:23
I'd ask, and she would tell me stories.
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我会去问，她会讲她的故事。
04:25
I listened, and I was her audience.
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我聆听，我做她的听众。
04:29
I got ideas.
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我一旦有了主意，
04:31
I wrote them down,
and I sketched them out.
and I sketched them out.
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我会写下来，然后画出来。
04:34
I showed her what to do
by acting out the scenarios myself.
by acting out the scenarios myself.
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我把剧情表演出来，告诉她该怎样做。
04:40
We would then stage them.
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然后我们开始表演。
04:42
So she posed, and I learned
more about photography.
more about photography.
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于是她摆动作，而我学习摄影。
04:48
Mom loved the process, the acting.
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母亲喜欢这个过程，表演的过程。
04:53
She felt worthy again,
she felt wanted and needed.
she felt wanted and needed.
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她又感到自己有价值了，
有了被人需要的感觉。
有了被人需要的感觉。
04:58
And she certainly wasn't camera-shy.
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她对着镜头绝对不害羞。
05:00
(Laughter)
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（笑声)
05:04
(Applause)
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（掌声）
05:12
Mom laughed hysterically at this one.
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母亲对着这张照片
几乎笑岔了气。
几乎笑岔了气。
05:16
(Laughter)
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（笑声）
05:19
The idea for this image
came from an old German film I'd seen,
came from an old German film I'd seen,
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这张照片的灵感来自我
看过的一部德国老电影，
看过的一部德国老电影，
05:23
about a submarine, called "Das Boot."
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关于潜艇的，叫《潜艇风暴》
05:26
As you can see, what I got instead
looked more like "E.T."
looked more like "E.T."
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你看得到，我拍得更像《外星人E.T.》
05:30
(Laughter)
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（笑声）
05:32
So I put this image aside,
thinking it was a total failure,
thinking it was a total failure,
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因此我把这张照片放到一边，
认为它完全失败了，
认为它完全失败了，
05:35
because it didn't reach
my particular vision.
my particular vision.
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因为它不符合我的眼界。
05:38
But Mom laughed so hard,
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但是，母亲笑得非常厉害，
05:41
I eventually, for fun,
decided to post it online anyway.
decided to post it online anyway.
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最终，因为好玩儿，我还是
决定把它放在网上了。
决定把它放在网上了。
05:47
It got an incredible amount of attention.
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它受到很多很多人的注意。
05:51
Now, with any Alzheimer's, dementia,
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一般来说，任何
阿尔茨海默病，老年痴呆，
阿尔茨海默病，老年痴呆，
05:56
there's a certain amount
of frustration and sadness
of frustration and sadness
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都会让人有一定程度的
挫折和悲痛感
挫折和悲痛感
05:59
for everyone involved.
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有关的人都会。
06:02
This is Mom's silent scream.
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这张是母亲的 “无声的呼喊”。
06:06
Her words to me one day were,
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她有一天对我说：
06:08
"Why is my head so full of things to say,
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“为什么我脑子里有很多要说的，
06:12
but before they reach my mouth,
I forget what they are?"
I forget what they are?"
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但到了嘴边，又忘记是什么了？”
06:20
"Why is my head so full of things to say,
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“为什么脑子里有那么多的事要说，
06:27
but before they reach my mouth,
I forget what they are?"
I forget what they are?"
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但是到了嘴边，
又忘记是什么了？”
又忘记是什么了？”
06:33
(Applause)
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（掌声）
06:44
Now, as full-time care partner
and full-time painter,
and full-time painter,
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此时，作为全职看护人，
全职画家，
全职画家，
06:49
I had my frustrations too.
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我也有挫折感。
06:53
(Laughter)
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（笑声）
06:55
But to balance off
all the difficulties, we played.
all the difficulties, we played.
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为了平衡这些压力和
困难，我们也找乐子。
困难，我们也找乐子。
06:58
That was Mom's happy place.
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这是母亲喜欢的地方。
07:01
And I needed her to be there, too.
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我也需要她在那里。
07:05
(Laughter)
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（笑声）
07:10
(Laughter)
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（笑声）
07:15
(Laughter)
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（笑声）
07:19
Now, Mom was also preoccupied with aging.
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现在母亲也很关注人变老的事。
07:22
She would say,
"How did I get so old, so fast?"
"How did I get so old, so fast?"
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她会说：“我怎么会这么快，
就变得这么老了？”
就变得这么老了？”
07:29
(Audience sighs)
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（听众叹息声）
07:41
"So old."
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“这么老！”
07:48
"So fast."
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“这么快!"
07:53
I also got Mom to model
for my oil paintings.
for my oil paintings.
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我也让母亲给我做油画模特。
07:57
This painting is called "The Dressmaker."
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这一幅画叫《裁缝》
08:02
I remember, as a kid,
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我记得，小时候，
08:05
Mom sewing clothes for the whole family
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全家的针线活都是母亲做的
08:07
on this massive, heavy sewing machine
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用那台很大很重的缝纫机
08:11
that was bolted
to the floor in the basement.
to the floor in the basement.
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是固定在地下室的地板上的。
08:15
Many nights, I would go downstairs
and bring my schoolwork with me.
and bring my schoolwork with me.
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很多的夜晚，我带着
家庭作业走下去。
家庭作业走下去。
08:20
I would sit behind her
in this overstuffed chair.
in this overstuffed chair.
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我会坐在她后面那张
垫得软软的椅子上。
垫得软软的椅子上。
08:25
The low hum of the huge motor
and the repetitive stitching sounds
and the repetitive stitching sounds
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大马达低沉的嗡嗡声
和反复的缝纫声
和反复的缝纫声
08:30
were comforting to me.
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让我觉得很温馨。
08:33
When Mom moved into my house,
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当母亲搬到我家里时，
08:35
I saved this machine and stored it
in my studio for safekeeping.
in my studio for safekeeping.
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我把缝纫机搬到了画室保存起来。
08:40
This painting brought me
back to my childhood.
back to my childhood.
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这幅画把我带回了童年时刻。
08:44
The interesting part
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有趣的是
08:46
was that it was now Mom,
sitting behind me,
sitting behind me,
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现在是母亲坐在我的后面，
08:51
watching me paint her
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看着我画她
08:53
working on that very same
machine she sewed at
machine she sewed at
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画她在缝纫机前工作
08:57
when I sat behind her, watching her sew,
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而我坐在她后面看她缝纫，
09:01
50 years earlier.
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50年前的情景。
09:07
I also gave Mom a project to do,
to keep her busy and thinking.
to keep her busy and thinking.
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我还让母亲做一件事，
让她忙着，让她动脑筋。
让她忙着，让她动脑筋。
09:11
I provided her with a small camera
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我给了她一个小相机
09:14
and asked her to take at least
10 pictures a day of anything she wanted.
10 pictures a day of anything she wanted.
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让她一天至少照十张照片，
随便照她喜欢的东西。
随便照她喜欢的东西。
09:18
These are Mom's photographs.
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这些是母亲的照片。
09:21
She's never held a camera
in her life before this.
in her life before this.
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在此之前，她从来
没有拿过照相机。
没有拿过照相机。
09:25
She was 93.
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她当时93岁。
09:53
We would sit down together
and talk about our work.
and talk about our work.
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我们会一起坐下来，
讨论我们的作品。
讨论我们的作品。
09:57
I would try to explain
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我试着去解释
09:58
(Laughter)
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（笑声）
10:00
how and why I did them,
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我是怎么样，又为什么这样做的，
10:03
the meaning, the feeling,
why they were relevant.
why they were relevant.
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它的意义，它的感觉，
为什么要这样。
为什么要这样。
10:07
Mom, on the other hand,
would just bluntly say,
would just bluntly say,
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然而，母亲只是简单地说：
10:10
"sì,"
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"看"
10:12
"no,"
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"哦，不"
10:13
"bella" or "bruta."
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“美丽” 或者 "粗鲁”。
10:15
(Laughter)
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（笑声）
10:17
I watched her facial expressions.
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我看着她的面部表情。
10:21
She always had the last say,
with words or without.
with words or without.
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母亲总是有最后的发言权，
不管她是否说话。
不管她是否说话。
10:28
This voyage of discovery
hasn't ended with Mom.
hasn't ended with Mom.
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母亲的探索旅程还没有结束。
10:33
She is now in an assisted
living residence,
living residence,
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她现在住在有人护理的居所，
10:37
a 10-minute walk away from my home.
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离我家十分钟的行程。
10:41
I visit her every other day.
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我每隔一天会去看她。
10:45
Her dementia had gotten to the point
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她的痴呆症严重到了一定程度
10:47
where it was unsafe for her
to be in my house.
to be in my house.
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住在我家里已经不安全了。
10:50
It has a lot of stairs.
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家里有很多的楼梯。
10:54
She doesn't know my name anymore.
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她已经不记得我的名字了。
10:58
(Voice breaking)
But you know what? That's OK.
But you know what? That's OK.
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（声音哽咽）但是，
这也没有关系！
这也没有关系！
11:02
She still recognizes my face
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她还认得出我的脸
11:05
and always has a big smile
when she sees me.
when she sees me.
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她每次看到我都笑容灿烂。
（掌声）
11:10
(Applause)
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11:23
(Applause ends)
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（掌声结束）
11:25
I don't take pictures of her anymore.
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我不再给她照像了。
11:28
That wouldn't be fair
or ethical on my part.
or ethical on my part.
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那样对她不公平，
或者说也不道德。
或者说也不道德。
11:32
And she wouldn't understand
the reasons for doing them.
the reasons for doing them.
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她已经不明白照像的原因了。
11:36
My father,
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我父亲，
11:38
my brother,
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兄弟，
11:40
(Voice breaking) my nephew,
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（哽咽）我的外甥，
11:46
my partner and my best friend,
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我的伴侣和我的挚友，
11:49
all passed away suddenly.
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都突然地过世了。
11:51
And I didn't have the chance
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我没有机会
11:54
to tell them how much
I appreciated and loved them.
I appreciated and loved them.
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告诉他们我有多么的感激，
多么的爱他们。
多么的爱他们。
11:58
With Mom, I need to be there
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对于母亲，我要陪着她
12:02
and make it a very long goodbye.
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做一个很长很长的告别。
12:09
(Applause)
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（掌声）
12:20
(Applause ends)
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（掌声结束）
12:22
For me, it's about being present
and really listening.
and really listening.
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对我来说，就是要
陪着她，仔细地聆听。
陪着她，仔细地聆听。
12:27
Dependents want to feel
a part of something, anything.
a part of something, anything.
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这些依赖你的人，希望能
有参与感，任何的参与都好。
有参与感，任何的参与都好。
12:30
It doesn't need to be something
exceptionally profound that's shared --
exceptionally profound that's shared --
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并不要是什么特别深刻的分享...
12:35
it could be as simple as walks together.
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即使是简单的一起行走都好。
12:38
Give them a voice
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给她们机会
12:41
of interaction, participation,
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来交流，来参与，
12:44
and a feeling of belonging.
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有归属感。
12:48
Make the time meaningful.
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让他们过得有意义。
12:52
Life, it's about wanting to live
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生命，在于热爱你的生活
12:56
and not waiting to die.
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而不是等待死亡来临。
13:01
(Applause)
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（掌声）
13:11
(Applause ends)
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（掌声结束）
13:14
Can I get a wave and a smile
from everyone, please?
from everyone, please?
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请大家每人都挥挥手，
微笑一下好吗？
微笑一下好吗？
13:18
(Laughter)
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（笑声）
13:20
This is for you, Mom.
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妈妈！这是献给你的！
（相机快门声）
13:23
(Camera clicks)
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（掌声）
13:25
(Applause)
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ABOUT THE SPEAKER
Tony Luciani - ArtistTony Luciani picked up a camera in 2014 to document his aging mom's struggle with dementia, beginning a four-year-long voyage of discovery.
Why you should listen
Tony Luciani picked up a camera in 2014 to document his aging mom's struggle with dementia, and it was the imaginative expression of the collaboration that propelled his work internationally. After more than 40 years as a full-time painter, Luciani garnered worldwide attention with this four-year-long photography series. Their voyage of discovery, expressing the benefits of inclusion and participation within a creative medium, has gone beyond the boundaries of recognizing it as just a personal visual diary.
Luciani graduated from Toronto's Ontario College of Art in 1977 with prestigious honors. At age 21, he was encouraged to continue with his fifth-year post-graduate study in Florence, Italy. It was there that he found maturity while carefully observing the historical paintings of the Renaissance Masters. Upon returning, he was promptly accepted for representation by a well-respected and established Canadian art gallery.
In defining his work, Luciani prefers to be placed in a tradition of realism, which is both interpretive and characterized by focused observation. As a photographer, he likes defining his imagery as an "obvious extension" to what he already creates as an artist.
Luciani's art can be found in private, public and corporate collections globally. An unabridged edition of one-hundred photographs titled "MAMMA, In the Meantime" is in the collection of the local chapter of the Canadian Alzheimer Society. He is represented by Loch Gallery in Toronto, Winnipeg and Calgary.
Tony Luciani | Speaker | TED.com