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Beth Malone: How my dad's dementia changed my idea of death (and life)
貝絲．馬龍: 我爸爸的失智症如何改變了我對於死亡（及生命）的看法
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帶著暖意和慈愛，貝絲．馬龍訴說這個非常私密的故事，談到她的爸爸因為額顳葉型失智症而在掙扎，也談到這件事如何改變了她對於死亡（和生命）的看法。這場感人的演說，談的是女兒的愛──以及放手和找到平靜。
Beth Malone - Social entrepreneur, artist
TED Resident Beth Malone brings bold art to public spaces across the US, encouraging artists to have a sense of humor, to be vulnerable and take creative risks. Full bio
TED Resident Beth Malone brings bold art to public spaces across the US, encouraging artists to have a sense of humor, to be vulnerable and take creative risks. Full bio
Double-click the English transcript below to play the video.
00:12
I've been doing some thinking.
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我思考了一陣子。
00:16
I'm going to kill my dad.
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我要殺了我爸爸。
00:19
I called my sister.
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我打電話給我姐姐。
00:20
"Listen,
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「聽著，
00:21
I've been doing some thinking.
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我思考了一陣子。
00:24
I'm going to kill Dad.
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我要殺了爸爸。
00:27
I'm going to take him to Oregon,
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我要帶他去奧勒崗，
00:30
find some heroin,
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找一些海洛因，
00:32
and give it to him."
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給他用。」
00:34
My dad has frontotemporal lobe dementia,
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我爸爸有額顳葉型失智症，
00:36
or FTD.
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也就是 FTD。
00:38
It's a confusing disease
that hits people in their 50s or 60s.
that hits people in their 50s or 60s.
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是種會讓人困惑的疾病，
通常在五、六十歲時發病。
通常在五、六十歲時發病。
00:41
It can completely change
someone's personality,
someone's personality,
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它會完全改變一個人的人格，
00:44
making them paranoid and even violent.
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讓他們偏執，甚至暴力。
00:47
My dad's been sick for a decade,
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我爸爸已經病了十年了，
00:49
but three years ago he got really sick,
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但三年前病況惡化，
00:51
and we had to move him out of his house --
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我們得把他帶離他的房子──
00:54
the house that I grew up in,
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那間房子是我長大的地方，
00:56
the house that he built
with his own hands.
with his own hands.
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是他自己用雙手建立起來的。
00:59
My strapping, cool dad
with the falsetto singing voice
with the falsetto singing voice
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我的魁梧酷老爸，唱歌時會用假聲，
01:04
had to move into a facility
for round-the-clock care
for round-the-clock care
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我們得把他送到有日夜照護的機構，
01:06
when he was just 65.
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那時他才 65 歲。
01:10
At first my mom and sisters
and I made the mistake
and I made the mistake
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我和我媽媽及姐妹
一開始犯了一個錯誤，
一開始犯了一個錯誤，
01:13
of putting him in a regular nursing home.
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把他送到一般的安養機構。
01:16
It was really pretty;
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那裡很漂亮；
01:17
it had plush carpet
and afternoon art classes
and afternoon art classes
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有長毛絨地毯，下午有藝術課程，
01:20
and a dog named Diane.
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還有隻叫戴安的狗。
但接著，我接到一通電話。
01:23
But then I got a phone call.
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01:26
"Ms. Malone, we've arrested your father."
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「馬龍小姐，
我們逮捕了你的父親。」
我們逮捕了你的父親。」
01:30
"What?"
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「什麼？」
01:32
"Well, he threatened
everybody with cutlery.
everybody with cutlery.
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「嗯，他拿著餐刀威脅每個人。
01:36
And then he yanked
the curtains off the wall,
the curtains off the wall,
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接著他把牆壁上的簾子扯下來，
01:39
and then he tried
to throw plants out the window.
to throw plants out the window.
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然後他試圖把植物丟出窗外。
01:42
And then, well, he pulled all
the old ladies out of their wheelchairs."
the old ladies out of their wheelchairs."
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接著，他把所有的老太太
都從輪椅上拉下來。」
都從輪椅上拉下來。」
01:49
"All the old ladies?"
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「所有的老太太？」
01:50
(Laughter)
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（笑聲）
01:51
"What a cowboy."
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「好一個牛仔。」
01:53
(Laughter)
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（笑聲）
01:54
After he got kicked out of there,
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在他被趕出去之後，
01:56
we bounced him between
a bunch of state-run facilities
a bunch of state-run facilities
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我們帶他去一些公立養護中心，
他總是被攆走，
他總是被攆走，
01:59
before finding a treatment center
specifically for people with dementia.
specifically for people with dementia.
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最後才找到一家
專門為失智症設立的治療中心。
專門為失智症設立的治療中心。
02:03
At first, he kind of liked it,
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一開始，他還蠻喜歡那裡的，
但隨時間過去，他的健康惡化，
02:05
but over time his health declined,
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02:07
and one day I walked in
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有一天，我去那裡時，
02:08
and found him sitting hunched over
on the ground wearing a onesie --
on the ground wearing a onesie --
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發現他坐在地上縮著身體，
穿著連身衣──
穿著連身衣──
02:12
those kinds of outfits
that zip in the back.
that zip in the back.
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背後有拉鏈的那種連身服裝。
02:17
I watched him for about an hour
as he yanked at it,
as he yanked at it,
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我看了他一個小時，
他一直在拉扯那件連身衣，
他一直在拉扯那件連身衣，
02:21
trying to find a way out of this thing.
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試著要把它脫掉。
02:24
And it's supposed to be practical,
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那本來應該是很實用的服裝，
02:26
but to me it looked like a straightjacket.
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但我只覺得它看起來像緊身約束衣。
02:29
And so I ran out.
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所以我跑出去了。
02:32
I left him there.
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我把他丟在那裡。
02:35
I sat in my truck -- his old truck --
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我坐在我的卡車裡──
那是他的老卡車──
那是他的老卡車──
02:37
hunched over,
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彎著身，
02:39
this really deep guttural cry
coming out of the pit of my belly.
coming out of the pit of my belly.
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從我的內心深處發出粗啞的哭聲。
02:43
I just couldn't believe that my father,
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我就是無法相信，我的父親，
我年輕時的阿多尼斯，
（註：希臘神話中的美少年）
（註：希臘神話中的美少年）
02:47
the Adonis of my youth,
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02:50
my really dear friend,
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我親愛的朋友，
02:53
would think that this kind of life
was worth living anymore.
was worth living anymore.
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會認為這樣的生命還值得活下去。
02:58
We're programmed
to prioritize productivity.
to prioritize productivity.
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我們天生就是會
把生產力排到高優先順序。
把生產力排到高優先順序。
03:02
So when a person --
an Adonis in this case --
an Adonis in this case --
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所以當一個人──
在這個例子中是阿多尼斯──
在這個例子中是阿多尼斯──
03:06
is no longer productive
in the way we expect him to be,
in the way we expect him to be,
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不再有我們期待他應該有的生產力，
不再有他期待他自己
該有的生產力時，
該有的生產力時，
03:09
the way that he expects himself to be,
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03:12
what value does that life have left?
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那樣的生命還剩什麼價值？
03:15
That day in the truck,
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那天，在卡車裡，
03:17
all I could imagine
was that my dad was being tortured
was that my dad was being tortured
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我能想像的只有我爸爸正受到虐待，
03:21
and his body was
the vessel of that torture.
the vessel of that torture.
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而他的身體就是那虐待他的容器。
03:26
I've got to get him out of that body.
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我得把他從那身體中救出來。
03:28
I've got to get him out of that body;
I'm going to kill Dad.
I'm going to kill Dad.
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我得把他從那身體中救出來；
我要殺了我爸爸。
我要殺了我爸爸。
03:32
I call my sister.
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我打電話給我姐姐。
03:35
"Beth," she said.
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「貝絲，」她說。
「你不會想要帶著
你殺了自己爸爸的記憶
你殺了自己爸爸的記憶
03:40
"You don't want
to live the rest of your life
to live the rest of your life
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03:42
knowing that you killed your father.
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度過你的下半輩子。
03:44
And you'd be arrested I think,
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且我認為你會被逮捕，
因為他無法縱容你做這事。
03:46
because he can't condone it.
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03:48
And you don't even know
how to buy heroin."
how to buy heroin."
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而且你甚至不知道去哪買海洛因。」
03:50
(Laughter)
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（笑聲）
03:51
It's true, I don't.
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是真的，我不知道。
03:53
(Laughter)
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（笑聲）
03:56
The truth is we talk
about his death a lot.
about his death a lot.
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事實是，我們常常談他的死亡。
03:58
When will it happen? What will it be like?
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何時會發生？會是怎樣的情況？
04:00
But I wish that we would have talked
about death when we were all healthy.
about death when we were all healthy.
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但我希望我們在大家都健康時
就已經談論過死亡。
就已經談論過死亡。
04:04
What does my best death look like?
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我最好的死亡會是什麼樣子的？
04:07
What does your best death look like?
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你最好的死亡會是什麼樣子的？
但我的家人之前不知道要那麼做。
04:10
But my family didn't know to do that.
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04:13
And my sister was right.
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我姐姐是對的。
04:15
I shouldn't murder Dad with heroin,
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我不該用海洛因來謀殺我爸爸，
04:18
but I've got to get him out of that body.
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但我得把他從他的身體中救出來。
04:22
So I went to a psychic.
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所以我去找靈媒。
04:24
And then a priest,
and then a support group,
and then a support group,
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接著去找牧師，然後是支持團體，
04:26
and they all said the same thing:
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他們都說一樣的話：
有時，人們不願離開
是因為他們擔心他們愛的人。
是因為他們擔心他們愛的人。
04:28
sometimes people hang on
when they're worried about loved ones.
when they're worried about loved ones.
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04:31
Just tell them you're safe,
and it's OK to go when you're ready.
and it's OK to go when you're ready.
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只要告訴他們你很安全，
準備好了就可以離開，沒關係的。
準備好了就可以離開，沒關係的。
04:35
So I went to see Dad.
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所以我去看爸爸。
04:37
I found him hunched over
on the ground in the onesie.
on the ground in the onesie.
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我發現他穿著連身衣，
曲身坐在地上。
曲身坐在地上。
04:40
He was staring past me
and just kind of looking at the ground.
and just kind of looking at the ground.
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他的視線穿過我，像是看著地板。
我給他一瓶薑汁汽水，
04:43
I gave him a ginger ale
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04:44
and just started talking
about nothing in particular,
about nothing in particular,
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開始說話，沒聊什麼特別的，
04:47
but as I was talking,
he sneezed from the ginger ale.
he sneezed from the ginger ale.
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但當我在說話時，
他因為薑汁汽水而打噴嚏。
他因為薑汁汽水而打噴嚏。
04:52
And the sneeze --
it jerked his body upright,
it jerked his body upright,
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而那噴嚏讓他的身體突然被拉直，
04:55
sparking him back to life a little bit.
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稍稍讓他有一點生命的火花。
04:57
And he just kept drinking and sneezing
and sparking, over and over and over again
and sparking, over and over and over again
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他只是不斷喝汽水和打噴嚏，
然後有一點火花，一次又一次，
然後有一點火花，一次又一次，
05:02
until it stopped.
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直到停止。
05:05
And I heard,
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而我聽到了，
05:07
"Heheheheheh,
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「嘿嘿嘿嘿嘿，
05:09
heheheheheh ...
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嘿嘿嘿嘿嘿……
05:12
this is so fabulous.
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這實在太棒了。
05:15
This is so fabulous."
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這實在太棒了。」
05:18
His eyes were open
and he was looking at me,
and he was looking at me,
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他的眼睛打開了，他看著我，
05:21
and I said, "Hi, Dad!"
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我說：「嗨，爸爸！」
05:23
and he said, "Hiya, Beth."
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而他說：「你好啊，貝絲。」
05:27
And I opened my mouth to tell him, right?
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而我要張開口，告訴他：
05:29
"Dad, if you want to die, you can die.
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「爸，如果你想要死，你可以。
05:32
We're all OK."
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我們都會沒事的。」對吧？
05:33
But as I opened my mouth to tell him,
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但當我張開口要告訴他時，
05:35
all I could say was, "Dad!
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我能說的只有：「爸！
05:40
I miss you."
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我好想你。」
05:42
And then he said, "Well, I miss you, too."
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接著他說：「我也好想你。」
05:44
And then I just fell over
because I'm just a mess.
because I'm just a mess.
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然後我就跌坐下來了，
因為我是一團糟。
因為我是一團糟。
05:47
So I fell over and I sat there with him
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我跌坐下來，我和他坐在那裡，
05:52
because for the first time in a long time
he seemed kind of OK.
he seemed kind of OK.
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因為這麼久以來，
他第一次看起來似乎很好。
他第一次看起來似乎很好。
05:56
And I memorized his hands,
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我記著他的手，
05:59
feeling so grateful that his spirit
was still attached to his body.
was still attached to his body.
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非常感恩他的心靈
還和他的身體連結在一起。
還和他的身體連結在一起。
06:05
And in that moment I realized
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在那一刻，我了解到，
06:08
I'm not responsible for this person.
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我不用對這個人負責。
06:11
I'm not his doctor,
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我不是他的醫生，
06:13
I'm not his mother,
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我不是他的母親，
06:15
I'm certainly not his God,
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我肯定不是他的神，
06:17
and maybe the best way to help him and me
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也許，幫助他和我最好的方式，
06:21
is to resume our roles
as father and daughter.
as father and daughter.
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就是繼續扮演我們的父女角色。
06:25
And so we just sat there,
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所以我們就坐在那裡，
06:27
calm and quiet like we've always done.
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像過去一直以來那樣，沉靜、安靜。
06:30
Nobody was productive.
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沒有人有生產力。
06:32
Both of us are still strong.
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我們兩個人都還很堅強。
06:37
"OK, Dad. I'm going to go,
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「好了，爸，我要走了，
06:40
but I'll see you tomorrow."
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但我明天會再來看你。」
06:43
"OK," he said.
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「好，」他說。
06:46
"Hey,
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「嘿，
06:48
this is a pretty nice hacienda."
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這是個挺好的大莊園。」
06:51
Thank you.
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謝謝。
06:53
(Applause)
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（掌聲）
ABOUT THE SPEAKER
Beth Malone - Social entrepreneur, artistTED Resident Beth Malone brings bold art to public spaces across the US, encouraging artists to have a sense of humor, to be vulnerable and take creative risks.
Why you should listen
Beth Malone is executive director and partner at Dashboard US, an award-winning, experimental creative agency. Dashboard has presented exhibitions and special artist projects in cities around the country including New York, New Orleans, Atlanta, and Detroit. Dashboard has commissioned new, nontraditional works from over 200 artists.
Malone encourages artists to have a sense of humor, to be vulnerable and take creative risks, a practice she employed for herself when processing illness, caretaking and death. In 2014, she and her dad were sitting on a couch in a psychiatric hospital in Atlanta, GA. He looked at her and said, "I’m gonna be lost after this. After this, I’m gonna be gone." In August 2017, her dad passed away from frontotemporal lobe dementia -- just two months after she gave her TED Talk. It was a good death.
Beth Malone | Speaker | TED.com