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Pelo, I need to tell you something.
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- In code.
- Yes.
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Anna, the director at MAIA
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has found somewhere for you to live.
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And your mom and dad
and Nicolas and I agreed to it.
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We said yes.
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It's a place in Paris.
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00:01:01,600 --> 00:01:03,600
We can come to see you
whenever you like.
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And whenever we like.
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00:01:05,440 --> 00:01:07,920
Your dad, your mom, Tatiana,
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00:01:08,080 --> 00:01:10,320
your grandparents, your cousins...
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00:01:11,320 --> 00:01:12,440
your aunts.
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00:01:29,920 --> 00:01:31,400
Can you hear me?
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00:01:56,200 --> 00:01:57,160
Are you listening?
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00:02:02,360 --> 00:02:04,240
We all have to live our lives.
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It's hard, but that's how it is.
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00:02:30,280 --> 00:02:34,720
PENELOPE, MY DEAR
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00:02:51,320 --> 00:02:53,960
For a long time,
I thought that life was simple,
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00:02:54,120 --> 00:02:57,080
simple, like the sea, the flowers
or the air we breathe.
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Life seemed enchanted to me.
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We were free to harvest
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00:03:02,720 --> 00:03:04,840
its delicious fruits
and divine pleasures.
25
00:03:05,000 --> 00:03:08,040
We were free
to choose whatever we desired.
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00:03:16,320 --> 00:03:18,680
Nicolas and I wanted a child.
27
00:03:18,840 --> 00:03:20,880
And no sooner
had we formed that desire
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than, as if by magic, I was pregnant.
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00:03:24,320 --> 00:03:26,080
I was happy to be bearing life.
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00:03:28,600 --> 00:03:30,800
At the birth, the midwife told me,
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"Be with your child!
Be with your child!
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00:03:34,360 --> 00:03:36,560
"Oh, darling, she's beautiful."
33
00:03:48,040 --> 00:03:51,160
As parents we were amazed
that we had created life
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00:03:51,320 --> 00:03:53,480
and intoxicated
by the feeling of a new love.
35
00:03:56,880 --> 00:03:58,320
Who's a beautiful baby?
36
00:03:58,960 --> 00:04:00,520
She's pedaling, in the water.
37
00:04:02,320 --> 00:04:03,560
Look!
38
00:04:05,760 --> 00:04:07,560
Will you give me your little hands?
39
00:04:11,240 --> 00:04:12,680
Are you going to soap her up?
40
00:04:12,840 --> 00:04:15,000
Wait, she's got a hair under her arm.
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00:04:15,160 --> 00:04:16,640
It doesn't matter.
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00:04:17,560 --> 00:04:18,720
It does.
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00:04:21,040 --> 00:04:24,040
Don't pull it. She's holding it down.
44
00:04:28,000 --> 00:04:30,640
You need to learn to sleep.
You don't know how to.
45
00:04:33,600 --> 00:04:35,480
Penelope wasn't sleeping at night.
46
00:04:36,560 --> 00:04:38,440
But she seemed fine to us.
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00:04:39,240 --> 00:04:40,080
At three months,
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00:04:40,280 --> 00:04:42,360
she'd follow my hand
along the cradle.
49
00:04:43,480 --> 00:04:45,320
That was our first game.
50
00:04:47,640 --> 00:04:50,600
Until she was two years old,
she developed like other kids.
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00:04:51,400 --> 00:04:53,560
Or, that's what we thought,
at the time.
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00:04:54,560 --> 00:04:56,000
Penelope was our first child.
53
00:05:05,680 --> 00:05:07,800
No, that's you. That's you!
54
00:05:07,960 --> 00:05:10,080
She's thinking.
55
00:05:19,840 --> 00:05:22,440
I experienced
the feeling of lost innocence,
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00:05:22,600 --> 00:05:24,320
that summer.
57
00:05:27,360 --> 00:05:29,880
We had gone on vacation
with some friends.
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00:05:31,680 --> 00:05:33,880
There were other children,
of Penelope's age.
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00:05:36,120 --> 00:05:37,640
She was different.
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00:05:38,840 --> 00:05:40,720
I could see it, without seeing it.
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00:05:43,240 --> 00:05:46,080
A woman pointed out to me
that she was hyperactive
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00:05:46,240 --> 00:05:48,880
and advised us
to consult a specialist quickly.
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00:05:50,200 --> 00:05:52,600
I immediately took
a strong dislike to her.
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00:05:53,680 --> 00:05:55,120
Why was she interfering?
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00:05:56,640 --> 00:06:00,080
But then a few days later,
when I was taking this photo,
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00:06:00,240 --> 00:06:02,520
my head suddenly started spinning.
67
00:06:03,800 --> 00:06:06,760
Penelope didn't seem different
from the other children,
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00:06:07,920 --> 00:06:10,000
but behind the surface image,
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00:06:10,160 --> 00:06:12,800
I could feel
there was another reality waiting.
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00:06:17,040 --> 00:06:18,320
At two and a half,
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00:06:18,480 --> 00:06:21,360
Penelope lost the skills she had,
within a few months.
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00:06:23,120 --> 00:06:25,160
She stopped mixing with people.
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00:06:25,320 --> 00:06:27,680
She stopped talking
and she stopped playing.
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00:06:28,680 --> 00:06:30,760
She'd wake up, shouting,
during the night,
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00:06:30,920 --> 00:06:34,000
and she'd keep herself awake,
to avoid sleeping, until dawn.
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00:06:36,640 --> 00:06:39,640
It's hard to get your head around
a child that's regressing.
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00:06:40,520 --> 00:06:43,040
And it's hard
to summon up those memories.
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00:06:45,880 --> 00:06:47,880
I don't have any footage
of those times,
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00:06:48,960 --> 00:06:52,040
just a mental image,
that sometimes haunts me.
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00:06:54,400 --> 00:06:57,280
Penelope, spinning, like a top,
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00:06:57,440 --> 00:07:00,840
constantly rubbing her hands,
at eye level.
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00:07:19,920 --> 00:07:21,680
Penelope, running in the street.
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00:07:23,920 --> 00:07:25,880
The leaves, blowing on the wind.
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00:07:31,080 --> 00:07:34,200
We had just seen
a reputed child psychiatrist.
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00:07:35,880 --> 00:07:37,720
Nicolas and I had explained to him
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00:07:37,880 --> 00:07:40,600
how Penelope had been
over the last few months.
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00:07:42,880 --> 00:07:45,120
The doctor
looked me straight in the eye.
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00:07:46,480 --> 00:07:48,320
"I'm going to tell you a story.
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00:07:49,080 --> 00:07:51,680
"It's about a mother,
who comes in with her son.
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00:07:52,880 --> 00:07:55,240
"The mother says
that her son's not very well.
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00:07:56,480 --> 00:07:58,440
"The doctor looks at the child
92
00:07:58,600 --> 00:08:00,960
"and says,
'You're right, this child isn't well.
93
00:08:01,120 --> 00:08:02,960
"'You need to come in again,
94
00:08:03,120 --> 00:08:06,240
"'twice a week, even,
but without your child.'"
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00:08:10,320 --> 00:08:13,520
That made me feel
like I had a lead ball in my belly.
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00:08:16,200 --> 00:08:18,800
If I got better,
would she get better too?
97
00:08:20,760 --> 00:08:22,240
I felt disagreement,
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00:08:22,400 --> 00:08:25,800
mixed with feelings of powerlessness
and blind rage.
99
00:08:31,520 --> 00:08:35,000
When I went back to film there,
I saw the digger.
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00:08:38,120 --> 00:08:41,040
I was happy, because it was like
it cleared everything away,
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00:08:41,680 --> 00:08:44,400
the memory and its burden of pain.
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00:09:38,760 --> 00:09:39,880
Play.
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00:09:44,400 --> 00:09:45,360
Wait.
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00:09:52,760 --> 00:09:55,600
One day,
a doctor looked me right in the eye.
105
00:09:56,960 --> 00:10:00,960
"This isn't nice to say or to hear,
but you need to know:
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00:10:01,120 --> 00:10:02,640
"Penelope is autistic."
107
00:10:05,880 --> 00:10:08,360
Without knowing
exactly what that meant,
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00:10:08,520 --> 00:10:11,320
I spoke to the psychoanalyst
that Penelope was seeing.
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00:10:12,200 --> 00:10:13,640
She said,
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00:10:13,800 --> 00:10:16,840
"As soon as I saw your daughter,
I knew she was autistic.
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00:10:17,560 --> 00:10:21,400
"I didn't tell you sooner,
because you weren't ready for it."
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00:10:22,280 --> 00:10:23,640
I couldn't believe it.
113
00:10:25,280 --> 00:10:26,760
But who is ready?
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00:10:26,920 --> 00:10:28,680
When would you be ready for that?
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00:10:31,920 --> 00:10:33,960
"You're going to go to a center,
Penelope.
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00:10:34,120 --> 00:10:36,560
"We'll give you a sedative
and you'll feel better.
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00:10:37,440 --> 00:10:40,840
"You should call the center tomorrow.
It's very good.
118
00:10:41,600 --> 00:10:43,240
"We need to move fast now."
119
00:10:48,160 --> 00:10:51,560
For a long time,
whenever I walked down her street,
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00:10:51,720 --> 00:10:55,600
I felt a violent desire
to smash her door down.
121
00:10:56,200 --> 00:10:59,320
A year of silence. A wasted year.
122
00:11:00,400 --> 00:11:03,600
But once we had found out,
there was no time to lose.
123
00:11:13,440 --> 00:11:16,000
I went to see a lot of specialists.
124
00:11:17,640 --> 00:11:22,040
They would often ask me not to stay,
due to professional confidentiality.
125
00:11:23,960 --> 00:11:25,320
I found that shocking.
126
00:11:26,440 --> 00:11:28,040
But it suited me too.
127
00:11:28,800 --> 00:11:29,760
I'd go to the café,
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00:11:29,920 --> 00:11:32,200
to enjoy my precious minutes
of freedom.
129
00:11:37,960 --> 00:11:39,760
One day, I heard about ABA,
130
00:11:39,920 --> 00:11:42,880
I heard about a behavioral therapy,
from the USA.
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00:11:44,280 --> 00:11:46,720
Sustained work, at 40 hours a week,
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00:11:46,880 --> 00:11:49,120
was supposed to enable children
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00:11:49,280 --> 00:11:51,720
that started treatment
before the age of five
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00:11:51,880 --> 00:11:53,800
to return to a normal life.
135
00:12:13,280 --> 00:12:15,400
I made a pact with myself.
136
00:12:16,920 --> 00:12:19,120
Penelope was three years
and nine months old.
137
00:12:19,960 --> 00:12:22,000
I gave myself three years
to save her.
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00:12:48,560 --> 00:12:49,920
As summer began,
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00:12:50,080 --> 00:12:54,400
we did some behavioral training,
with my family and some friends.
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00:12:55,440 --> 00:12:59,560
There was Céline, Jean-Claude,
Mylène, Camille,
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00:12:59,720 --> 00:13:03,520
France, my mother,
and Raphaëlle and Marie, my sisters.
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00:13:05,160 --> 00:13:07,360
We needed to address
the most urgent matters,
143
00:13:08,800 --> 00:13:10,320
to learn to react when Penelope
144
00:13:10,480 --> 00:13:12,560
threw herself to the ground,
in the street,
145
00:13:12,720 --> 00:13:16,440
when she got up, for nights in a row
or when she bit.
146
00:13:19,160 --> 00:13:20,360
Bike.
147
00:13:21,760 --> 00:13:22,760
Bike.
148
00:13:26,320 --> 00:13:27,360
Bike.
149
00:13:31,240 --> 00:13:32,800
Penelope, look at me.
150
00:13:32,960 --> 00:13:34,600
Great, you're looking at me.
151
00:13:35,320 --> 00:13:36,520
Give this to Noé.
152
00:13:39,960 --> 00:13:41,800
That's good. You looked at Noé. Nice!
153
00:13:41,960 --> 00:13:44,200
Good job!
154
00:13:46,040 --> 00:13:48,640
We'd work with Penelope,
whenever we could.
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00:13:50,520 --> 00:13:51,240
Penelope.
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00:13:51,400 --> 00:13:55,920
We taught her to make suitable,
useful, controlled movements.
157
00:13:56,680 --> 00:13:59,640
Good. Say, "Te."
158
00:13:59,800 --> 00:14:01,480
Whenever she got an answer right,
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00:14:01,640 --> 00:14:04,560
she'd be rewarded,
with something she liked,
160
00:14:04,720 --> 00:14:06,480
a candy, for example.
161
00:14:12,480 --> 00:14:13,760
That's great!
162
00:14:13,920 --> 00:14:16,760
OK, let's go again.
163
00:14:16,920 --> 00:14:21,200
Say, "Ra. Ra."
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00:14:22,160 --> 00:14:24,600
"Quet", "quet"...
165
00:14:25,520 --> 00:14:29,080
- "Quet-te."
- "Quet-te", yes..
166
00:14:30,560 --> 00:14:34,080
Penelope. "Ra-quet-te."
167
00:14:34,240 --> 00:14:35,040
Again.
168
00:14:35,200 --> 00:14:38,720
I can see now
how brutal those sessions were.
169
00:14:40,360 --> 00:14:41,920
I thought that was the price,
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00:14:42,080 --> 00:14:44,840
to get Penelope back
to the peripheries of society.
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00:14:46,240 --> 00:14:47,760
The peripheries of society.
172
00:14:48,520 --> 00:14:50,880
That was my idea of getting better.
173
00:15:28,920 --> 00:15:30,000
My grandmother asked,
174
00:15:30,160 --> 00:15:33,200
"Do you believe what they say,
with their methods?
175
00:15:33,360 --> 00:15:35,160
"That's absurd.
176
00:15:35,320 --> 00:15:37,520
"You need to leave that child
in peace.
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00:15:37,680 --> 00:15:39,440
"Love is the only cure."
178
00:15:41,120 --> 00:15:44,200
"Right, love is a fine thing,"
I said.
179
00:15:45,080 --> 00:15:48,880
"But Penelope needs to learn
to talk, to write and to count."
180
00:15:49,040 --> 00:15:51,120
"And to go to school,
like other kids."
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00:15:53,240 --> 00:15:56,480
She said, "Don't be so silly.
School's a waste of time."
182
00:16:01,840 --> 00:16:04,400
Hey, come on, pull a face, like this.
183
00:16:06,160 --> 00:16:07,520
Go on, go like this.
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00:16:32,920 --> 00:16:34,480
Say, "tree."
185
00:16:37,960 --> 00:16:40,720
Tree. Tree.
186
00:16:44,200 --> 00:16:45,520
Say, "Tr."
187
00:16:48,240 --> 00:16:50,800
Say, "Tr."
188
00:16:50,960 --> 00:16:52,960
Say, "ee."
189
00:16:56,360 --> 00:16:57,920
Say, "ee."
190
00:17:00,160 --> 00:17:02,440
Look. Look at me, Penelope.
191
00:17:03,360 --> 00:17:05,240
"Tree."
192
00:17:06,960 --> 00:17:08,600
"Tree."
193
00:17:10,760 --> 00:17:12,840
Look, there's someone waiting for us.
194
00:17:14,240 --> 00:17:15,320
You're walking well.
195
00:17:16,000 --> 00:17:18,680
Who's that? Pelo! Pelo!
196
00:17:18,840 --> 00:17:20,320
Take it easy, Pelo.
197
00:17:20,480 --> 00:17:22,200
Pelo, Pelo.
198
00:17:22,360 --> 00:17:25,480
Pelo, wait.
199
00:17:26,120 --> 00:17:28,760
Pelo, Pelo! Pelo!
200
00:17:30,000 --> 00:17:30,880
- Pelo.
- Wait!
201
00:17:31,040 --> 00:17:31,840
Wait.
202
00:17:33,040 --> 00:17:34,200
Good, you waited.
203
00:17:34,640 --> 00:17:35,520
Pelo.
204
00:17:41,160 --> 00:17:43,440
Good. You're looking at me.
205
00:17:44,320 --> 00:17:46,280
That's good. You're nice and calm.
206
00:17:47,160 --> 00:17:50,120
That's a post.
It makes music, if you hit it.
207
00:17:50,280 --> 00:17:51,120
Look.
208
00:17:52,840 --> 00:17:53,640
Hit it.
209
00:17:54,320 --> 00:17:55,960
Yes, that's good.
210
00:17:56,120 --> 00:17:57,320
Hit it.
211
00:17:58,320 --> 00:17:59,960
Yes! Again!
212
00:18:00,640 --> 00:18:02,760
That feels good. Good stuff.
213
00:18:02,920 --> 00:18:04,080
Bye-bye, post.
214
00:18:06,440 --> 00:18:08,720
Take it easy, Pelo. Pelo, Pelo, Pelo!
215
00:18:08,880 --> 00:18:10,400
Pelo, we're walking.
216
00:18:11,400 --> 00:18:12,400
We're walking.
217
00:18:12,560 --> 00:18:13,920
And you say...
218
00:18:15,240 --> 00:18:16,800
Yes, so, "Help..."
219
00:18:16,960 --> 00:18:18,920
- Help me.
- Yes.
220
00:18:22,760 --> 00:18:24,160
And then...
221
00:18:24,320 --> 00:18:26,560
Calm down. Nice and calm.
Everything's good.
222
00:18:27,440 --> 00:18:29,760
That's great.
223
00:18:30,720 --> 00:18:32,680
What do you want to do, Pelo?
224
00:18:32,840 --> 00:18:34,120
Go up.
225
00:18:34,280 --> 00:18:36,440
No, now you want to go d...
226
00:18:36,600 --> 00:18:38,640
I want to go up.
227
00:18:38,800 --> 00:18:41,240
You don't want to go up.
You already went up.
228
00:18:41,400 --> 00:18:44,720
- I want to go dow...
- Go down.
229
00:18:44,880 --> 00:18:46,720
Yes, so tell me.
230
00:18:48,400 --> 00:18:49,600
Help...
231
00:18:49,760 --> 00:18:54,920
No, Pelo, say to me,
"I want to get down. Help me."
232
00:18:55,080 --> 00:18:56,400
Help me.
233
00:18:56,560 --> 00:18:58,080
OK, I'll help you.
234
00:18:58,240 --> 00:18:58,840
One!
235
00:18:59,640 --> 00:19:00,520
Two!
236
00:19:00,680 --> 00:19:03,840
- Three!
- Three, yes!
237
00:19:15,920 --> 00:19:17,720
Penelope woke up at night.
238
00:19:20,040 --> 00:19:23,880
I could hear her little voice,
repeating what she had learned.
239
00:19:27,440 --> 00:19:29,280
It seemed incredible to me.
240
00:19:30,840 --> 00:19:33,240
She was rediscovering language
and play.
241
00:19:39,520 --> 00:19:42,200
At times like that,
I felt like I had won a war.
242
00:19:44,400 --> 00:19:46,320
I was laughing for joy, inside.
243
00:19:59,480 --> 00:20:03,080
Sometimes, I'd feel her look,
full of anxiety and incomprehension.
244
00:20:06,000 --> 00:20:08,400
And then I'd feel powerless.
245
00:20:09,120 --> 00:20:11,000
I'd hold her tight in my arms.
246
00:20:27,720 --> 00:20:32,480
We're in Mulhouse
and Pelo is walking in the forest.
247
00:20:37,400 --> 00:20:40,880
We're with my mom...
248
00:20:42,400 --> 00:20:43,000
France.
249
00:20:43,160 --> 00:20:44,480
Yes, Pelo!
250
00:20:45,720 --> 00:20:46,760
Pelo!
251
00:20:47,840 --> 00:20:49,040
Pelo.
252
00:20:49,920 --> 00:20:50,920
Pelo.
253
00:20:53,800 --> 00:20:57,000
Every month, we went to Mulhouse,
to a specialist center,
254
00:20:57,160 --> 00:21:01,080
run by an amazing couple,
Mr. and Mrs. Wimbert.
255
00:21:05,120 --> 00:21:07,840
Following Dr. Tomatis's method,
256
00:21:08,000 --> 00:21:12,680
Penelope listened to frequencies
that help build myelin back up.
257
00:21:12,840 --> 00:21:15,600
That's a fatty protective material,
around the neurons.
258
00:21:15,760 --> 00:21:20,120
She's listening to a filtered version
of her mother's voice.
259
00:21:23,240 --> 00:21:24,760
Mom...
260
00:21:35,040 --> 00:21:36,720
Go alongside her.
261
00:21:36,880 --> 00:21:39,040
Yes, Mom...
262
00:21:39,880 --> 00:21:41,240
I liked going there.
263
00:21:43,840 --> 00:21:45,200
I drew.
264
00:21:45,760 --> 00:21:49,080
I listened to music
and read stories aloud.
265
00:21:50,280 --> 00:21:51,440
Mr. and Mrs. Wimbert
266
00:21:51,600 --> 00:21:53,840
suggested reading The Little Prince
to her.
267
00:21:57,160 --> 00:22:00,120
When I got to the part
when the fox says,
268
00:22:00,280 --> 00:22:03,680
"I can't play with you,
I'm not tame,"
269
00:22:04,680 --> 00:22:06,280
I thought about Penelope.
270
00:22:08,040 --> 00:22:09,320
"Tame."
271
00:22:10,360 --> 00:22:12,320
That implies forming bonds.
272
00:22:14,280 --> 00:22:16,680
That was the whole challenge:
to form bonds.
273
00:22:28,120 --> 00:22:29,240
Play something.
274
00:22:34,920 --> 00:22:37,240
We stayed
with the town's Protestant pastor
275
00:22:37,400 --> 00:22:38,720
or at the Ibis hotel.
276
00:22:39,920 --> 00:22:42,680
In the evening,
there was the bath-time ritual.
277
00:22:42,840 --> 00:22:46,440
Penelope would often wave her hand,
splashing it nervously in the water.
278
00:22:48,040 --> 00:22:51,640
But one evening,
she started playing with a tea set.
279
00:22:52,480 --> 00:22:55,520
She poured water in a cup
and handed it to me.
280
00:22:55,680 --> 00:22:57,760
"Here's some tea. Here you go."
281
00:22:58,680 --> 00:23:02,760
She was pretending to be an adult,
imitating the melody of the phrasing.
282
00:23:03,880 --> 00:23:06,480
The language was there,
hidden somewhere.
283
00:23:08,400 --> 00:23:10,000
The post...
284
00:23:10,160 --> 00:23:12,320
And we said it...
285
00:23:12,480 --> 00:23:14,600
And we...
286
00:23:55,920 --> 00:23:57,800
On Saturday evening,
287
00:23:57,960 --> 00:24:02,040
Penelope woke up in a fit of tears.
288
00:24:02,200 --> 00:24:05,120
She cried for a long time,
calling for me.
289
00:24:05,280 --> 00:24:09,280
She put her arms around me
and snuggled up to my neck.
290
00:24:09,440 --> 00:24:11,840
She's still very unsettled,
291
00:24:12,000 --> 00:24:15,240
but that was the first time
that she went to sleep in my arms.
292
00:24:20,400 --> 00:24:23,960
Today, Mrs. Wimbert told us
293
00:24:24,120 --> 00:24:27,120
that Penelope would go to school
next year, for sure,
294
00:24:27,960 --> 00:24:30,160
like all the other children
295
00:24:30,320 --> 00:24:32,880
and that we had done
a really good job.
296
00:24:34,000 --> 00:24:38,000
And that we'd need to come back,
regularly, for the next year.
297
00:24:39,200 --> 00:24:43,200
And that we had made good progress.
298
00:24:48,680 --> 00:24:51,720
Pelo?
Who's that little girl in the mirror?
299
00:24:53,800 --> 00:24:56,520
Who's the little girl,
looking at herself in the mirror?
300
00:24:57,880 --> 00:24:59,160
What's her name?
301
00:25:03,360 --> 00:25:04,880
What's your name?
302
00:25:05,960 --> 00:25:06,960
Say it louder.
303
00:25:08,520 --> 00:25:10,840
What's your name?
304
00:25:11,000 --> 00:25:13,320
- What? I didn't hear.
- Penelope.
305
00:25:13,480 --> 00:25:15,640
Penelope. That's right, darling.
306
00:25:15,800 --> 00:25:17,920
And how old are you, Penelope?
307
00:25:18,080 --> 00:25:19,400
I didn't hear.
308
00:25:19,560 --> 00:25:21,800
- I'm four.
- You're four?
309
00:25:21,960 --> 00:25:23,480
You're five now.
310
00:25:23,640 --> 00:25:26,000
You've been five for two days.
311
00:25:26,160 --> 00:25:28,120
This is the...
312
00:25:28,280 --> 00:25:30,440
I didn't get that. What do you want?
313
00:25:30,600 --> 00:25:32,080
Take a bath.
314
00:25:32,240 --> 00:25:34,080
- You want to take a bath?
- Yes.
315
00:25:35,440 --> 00:25:36,960
Do you want to take a shower?
316
00:25:37,120 --> 00:25:40,120
Little bear... Little brown bear.
317
00:25:40,280 --> 00:25:42,480
A little brown bear or a shower?
318
00:25:42,640 --> 00:25:44,840
- Shower!
- A shower.
319
00:25:46,160 --> 00:25:47,200
Will you take it off?
320
00:25:49,800 --> 00:25:52,560
Penelope?
Shall we take that sweater off?
321
00:25:55,440 --> 00:25:56,840
I'll undo the button.
322
00:26:07,360 --> 00:26:09,520
Then give the sweater to me. Thanks.
323
00:26:09,680 --> 00:26:10,920
And the t-shirt.
324
00:26:13,080 --> 00:26:15,360
Go ahead. Take it off.
325
00:26:17,160 --> 00:26:19,560
Is that difficult?
326
00:26:20,640 --> 00:26:22,840
What do we say, when it's difficult?
327
00:26:25,280 --> 00:26:27,400
- "Help me."
- Help me.
328
00:26:27,560 --> 00:26:28,440
Good.
329
00:26:39,480 --> 00:26:41,000
Do it on your own now.
330
00:26:47,240 --> 00:26:49,880
Nice job! That's great.
331
00:26:50,040 --> 00:26:52,600
And what are you going to do now?
332
00:26:52,760 --> 00:26:55,280
- Take a shower?
- A shower.
333
00:27:14,800 --> 00:27:16,480
One winter evening,
334
00:27:19,080 --> 00:27:22,360
Nicolas and I opened a letter
from the Trousseau Hospital.
335
00:27:24,400 --> 00:27:25,920
"Dear Sir, Madam,
336
00:27:26,080 --> 00:27:29,400
"Our tests
have unfortunately confirmed
337
00:27:29,560 --> 00:27:32,200
"that your daughter
has Rett Syndrome."
338
00:27:35,560 --> 00:27:38,360
We got on the internet,
with our hands shaking.
339
00:27:40,440 --> 00:27:42,800
"An illness
of the central nervous system.
340
00:27:43,400 --> 00:27:46,400
"Loss of acquired
cognitive and motor skills.
341
00:27:46,560 --> 00:27:48,800
"Behavioral deterioration.
342
00:27:49,400 --> 00:27:52,280
"Severe autistic symptoms."
343
00:27:55,760 --> 00:27:58,800
The diagnosis hit us like a bomb,
in our living room.
344
00:28:00,200 --> 00:28:03,120
We collapsed into each other's arms.
345
00:28:03,280 --> 00:28:05,280
"What's happening to us, darling?"
346
00:28:07,960 --> 00:28:10,720
Nicolas said, "This really isn't
what I wanted for us."
347
00:28:12,360 --> 00:28:13,640
I couldn't speak.
348
00:28:16,360 --> 00:28:19,960
The next day, we paced the corridors
at the Trousseau Hospital.
349
00:28:20,560 --> 00:28:21,920
Nicolas shouted,
350
00:28:22,080 --> 00:28:24,800
"It's disgraceful,
telling us that in a letter."
351
00:28:24,960 --> 00:28:27,160
And it was disgraceful.
It was horrible.
352
00:28:32,200 --> 00:28:34,160
Later, after months of waiting,
353
00:28:34,320 --> 00:28:37,720
I went to an appointment
with a Rett Syndrome specialist.
354
00:28:38,240 --> 00:28:39,560
During the appointment,
355
00:28:39,720 --> 00:28:41,840
in front of Penelope,
the doctor said,
356
00:28:42,600 --> 00:28:44,960
"You need to accept
that you've lost your child."
357
00:29:02,720 --> 00:29:03,920
- Shall we go?
- Yes.
358
00:29:04,920 --> 00:29:05,760
Here.
359
00:29:12,400 --> 00:29:15,880
We needed some resources,
to commit to helping Penelope.
360
00:29:16,040 --> 00:29:17,000
Penelope?
361
00:29:18,040 --> 00:29:19,480
Are you looking at the boats?
362
00:29:19,640 --> 00:29:21,440
Nicolas and I reached an agreement.
363
00:29:21,600 --> 00:29:22,280
The boats.
364
00:29:22,440 --> 00:29:24,240
I would stop making films.
365
00:29:24,400 --> 00:29:26,360
I'd do anything to save our daughter.
366
00:29:26,520 --> 00:29:27,400
OK.
367
00:29:28,000 --> 00:29:31,560
And he would find a job
where he could make lots of money,
368
00:29:31,720 --> 00:29:33,840
so we could fund our plans.
369
00:29:35,560 --> 00:29:39,000
Suddenly
our pathways had branched off,
370
00:29:39,160 --> 00:29:41,600
taking us far
from what we had anticipated.
371
00:29:42,800 --> 00:29:44,720
Penelope became my mission.
372
00:29:48,760 --> 00:29:51,640
In the morning, at breakfast,
Nicolas said,
373
00:29:51,800 --> 00:29:55,000
"I'm going to jump off a cliff,
with Penelope."
374
00:29:55,160 --> 00:29:57,880
In the afternoon,
we went out on our bikes.
375
00:29:58,040 --> 00:30:00,280
Nicolas went riding out ahead.
376
00:30:00,440 --> 00:30:03,920
I caught up with him,
he waited for me,
377
00:30:04,080 --> 00:30:05,280
and I cried.
378
00:30:06,720 --> 00:30:09,160
He said,
"This is beautiful. Do you like it?"
379
00:30:09,320 --> 00:30:11,360
I said yes, with tears in my eyes.
380
00:30:11,520 --> 00:30:14,800
He thought it was the wind
that was making me cry.
381
00:30:14,960 --> 00:30:16,240
Then he sped off again
382
00:30:16,400 --> 00:30:19,280
and, behind him,
I cried and cried and cried.
383
00:30:19,440 --> 00:30:21,920
We each have our way of fighting it.
384
00:30:23,120 --> 00:30:24,320
And all those questions,
385
00:30:24,480 --> 00:30:27,560
swirling around my head,
like seagulls.
386
00:30:28,320 --> 00:30:30,240
What is a life worth?
387
00:30:31,400 --> 00:30:33,320
What is love worth?
388
00:31:07,600 --> 00:31:09,640
That grandfather's
explaining everything.
389
00:31:48,760 --> 00:31:50,920
I was scared of going back to Paris.
390
00:31:53,400 --> 00:31:54,960
It was driving me crazy,
391
00:31:55,400 --> 00:31:58,920
those psychologists,
stimulating Penelope so mechanically.
392
00:32:00,600 --> 00:32:02,760
They didn't have
any clinical experience.
393
00:32:06,880 --> 00:32:08,280
I was short of everything -
394
00:32:08,440 --> 00:32:09,600
qualified personnel,
395
00:32:09,760 --> 00:32:12,320
financial resources
and educational tools.
396
00:32:18,200 --> 00:32:20,440
Back then,
my parents were living in New York.
397
00:32:22,720 --> 00:32:26,080
I thought maybe
we could save Penelope in the USA.
398
00:32:27,280 --> 00:32:28,720
We need...
399
00:32:28,880 --> 00:32:33,440
We need to know exactly
what we could do in the USA.
400
00:32:33,600 --> 00:32:37,560
Absolutely everything we can do -
the current research - everything.
401
00:32:37,720 --> 00:32:40,160
And we'll come straight away.
402
00:32:40,320 --> 00:32:42,280
We're ready.
403
00:32:42,440 --> 00:32:47,480
We'll jump on a plane
and we'll go to see the specialists.
404
00:32:47,640 --> 00:32:50,360
The people here
say there's nothing we can do.
405
00:32:54,640 --> 00:32:58,200
We're sending messages and stuff,
but...
406
00:33:02,880 --> 00:33:06,000
We'll come straight away,
as soon as we have an appointment.
407
00:33:06,160 --> 00:33:06,840
OK.
408
00:33:07,000 --> 00:33:09,480
Hey, Pelo's in New York!
409
00:33:12,360 --> 00:33:13,480
All good, Pelo?
410
00:33:15,520 --> 00:33:16,480
Are you OK?
411
00:33:18,920 --> 00:33:20,920
Say something back, darling.
412
00:33:21,800 --> 00:33:22,800
How are you doing?
413
00:33:23,800 --> 00:33:24,880
Papa.
414
00:33:25,040 --> 00:33:25,800
Yes.
415
00:33:28,280 --> 00:33:30,040
"Everything's great, Mom."
416
00:33:30,680 --> 00:33:32,600
I contacted Bridget Taylor,
417
00:33:33,320 --> 00:33:36,240
the director at an ABA clinic,
in New Jersey.
418
00:33:37,200 --> 00:33:38,560
She told me...
419
00:33:44,200 --> 00:33:46,520
I liked that idea
that anything was possible.
420
00:34:16,240 --> 00:34:17,080
Pelo!
421
00:34:32,160 --> 00:34:36,040
I didn't tell Bridget
that Penelope had Rett Syndrome.
422
00:34:36,200 --> 00:34:39,520
I think I wanted to see
what her diagnosis she'd make.
423
00:34:57,080 --> 00:35:00,320
Not speaking those words,
"Rett Syndrome,"
424
00:35:00,480 --> 00:35:03,320
allowed me to believe
that Penelope could get better.
425
00:35:47,280 --> 00:35:50,160
Bridget could feel
that it was a touchy subject.
426
00:35:50,320 --> 00:35:51,880
She moved on to something else.
427
00:35:56,880 --> 00:35:58,720
Do you want the cartoon?
428
00:35:58,880 --> 00:35:59,880
Yes, the cartoon.
429
00:36:00,040 --> 00:36:02,120
She knew I needed to stay on my feet.
430
00:36:16,200 --> 00:36:18,360
What do you want to be like?
431
00:36:19,120 --> 00:36:21,560
A little one. Look.
432
00:36:24,400 --> 00:36:29,040
I want to be big,
said the Little Princess.
433
00:36:31,320 --> 00:36:34,080
"You are big,"
said the Little Prince.
434
00:38:43,720 --> 00:38:45,280
I want cartoons.
435
00:38:45,440 --> 00:38:47,880
After. We'll watch some afterwards.
436
00:38:54,480 --> 00:38:57,160
A behavioralist, a reflexologist,
437
00:38:57,320 --> 00:38:59,600
an osteopath, a magnetizer.
438
00:39:02,360 --> 00:39:04,400
Eventually
we had had enough appointments.
439
00:39:05,440 --> 00:39:08,680
We needed to catch our breath
and get a change of air.
440
00:39:36,080 --> 00:39:38,760
I threw myself into the waves
and let out a shout.
441
00:39:38,920 --> 00:39:40,600
You were running on the beach.
442
00:39:40,760 --> 00:39:42,720
You were throwing sand
with mad energy.
443
00:39:46,840 --> 00:39:48,280
I copied you.
444
00:39:49,200 --> 00:39:50,800
You seemed surprised.
445
00:39:52,800 --> 00:39:55,840
You stopped
and your eyes looked into mine.
446
00:39:56,800 --> 00:40:00,240
In that frozen moment,
you said something to me,
447
00:40:01,000 --> 00:40:03,000
something that I didn't understand.
448
00:40:33,800 --> 00:40:36,720
A year after starting the ABA,
449
00:40:37,960 --> 00:40:40,160
several people have left us,
450
00:40:40,720 --> 00:40:43,520
have stopped working with Penelope.
451
00:40:45,280 --> 00:40:49,160
Mylène, Jean-Claude, Céline.
452
00:40:52,040 --> 00:40:54,760
Raphaël and Marine,
the sisters, are still with us.
453
00:41:00,720 --> 00:41:03,080
Other people have joined us.
454
00:41:04,240 --> 00:41:05,320
Elina...
455
00:41:09,560 --> 00:41:10,440
Elina...
456
00:41:22,160 --> 00:41:27,880
The Wimberts say
that Penelope's not doing so badly.
457
00:41:41,240 --> 00:41:42,560
Faster than time...
458
00:41:43,280 --> 00:41:46,760
Hair grows at a certain pace.
It's the same with this.
459
00:41:46,920 --> 00:41:49,800
Every time,
we've mentioned carrots to you.
460
00:41:49,960 --> 00:41:52,880
You have to do that.
You really do, take it from me.
461
00:41:53,040 --> 00:41:54,240
Same for you.
462
00:41:54,400 --> 00:41:55,000
Do what?
463
00:41:55,160 --> 00:41:58,560
Carrot juice. Go right ahead.
464
00:42:07,360 --> 00:42:09,280
What do you think about Penelope?
465
00:42:13,960 --> 00:42:15,720
She's a nice little girl.
466
00:42:21,120 --> 00:42:23,240
What do you think about Tomatis?
467
00:42:25,040 --> 00:42:27,280
It's better with carrot juice.
468
00:42:31,040 --> 00:42:34,240
There should be a carrot juice brand
called Tomatis.
469
00:42:38,480 --> 00:42:41,320
And how do you feel,
listening to that music?
470
00:42:43,920 --> 00:42:46,720
It gives me an erection,
under the blanket.
471
00:42:47,800 --> 00:42:50,480
So you'd recommend Tomatis
to everyone.
472
00:42:51,440 --> 00:42:52,320
Yes.
473
00:42:53,600 --> 00:42:55,280
And how does Penelope react?
474
00:42:57,240 --> 00:42:58,600
It calms her down.
475
00:43:00,960 --> 00:43:03,120
It lets her engage with the world.
476
00:43:04,000 --> 00:43:05,240
How do you mean?
477
00:43:09,240 --> 00:43:11,080
Not to be scared of the world.
478
00:43:15,840 --> 00:43:17,400
It comforts her.
479
00:43:54,760 --> 00:43:57,600
I had become Penelope's second body.
480
00:43:59,040 --> 00:44:02,080
She needed help
with all her everyday activities,
481
00:44:02,240 --> 00:44:04,000
day and night.
482
00:44:06,280 --> 00:44:08,240
Some nights, I'd just go to sleep,
483
00:44:08,400 --> 00:44:10,800
leaving her to ransack the room,
484
00:44:10,960 --> 00:44:12,640
rather than go in to her.
485
00:44:15,040 --> 00:44:17,120
She even burst into the living room,
486
00:44:17,280 --> 00:44:21,280
covered in excrement,
in her hair, her mouth - everywhere.
487
00:44:23,480 --> 00:44:25,640
She needed a long shower.
488
00:44:28,480 --> 00:44:30,680
We had to scrub her,
with several gloves
489
00:44:30,840 --> 00:44:32,320
and use a fine-tooth comb
490
00:44:32,480 --> 00:44:36,360
to get out the little bits,
stuck in her hair, like lice.
491
00:44:37,440 --> 00:44:39,520
Then we had to wash and air the room
492
00:44:39,680 --> 00:44:41,640
and light incense and candles.
493
00:44:42,720 --> 00:44:44,000
Then I went back to bed.
494
00:45:06,080 --> 00:45:08,680
Ask her!
Say you want to ride the bike!
495
00:45:12,680 --> 00:45:15,000
She wants to ride, but she's shy.
496
00:45:15,840 --> 00:45:17,640
- Why?
- I don't know.
497
00:45:19,480 --> 00:45:22,800
The next day I went for coffee
with a friend who said,
498
00:45:22,960 --> 00:45:25,720
"You need to breathe.
Go and do some yoga.
499
00:45:25,880 --> 00:45:29,280
"You need to go out for a meal
and have a good bottle of Chablis,
500
00:45:29,440 --> 00:45:31,600
"with some savory pastries, to start.
501
00:45:31,760 --> 00:45:33,960
"You need to say, 'Life's good!'
502
00:45:34,120 --> 00:45:35,840
"'This Chablis is great.'"
503
00:45:52,920 --> 00:45:55,680
Penelope,
sometimes I've wanted to kill you.
504
00:45:58,160 --> 00:46:00,920
And then I'd thank Medea,
for having done it.
505
00:46:14,840 --> 00:46:16,600
Tatiana came along as a surprise,
506
00:46:16,760 --> 00:46:19,400
sweeping all the sadness
out of her way.
507
00:46:22,160 --> 00:46:23,600
When she was born,
508
00:46:23,760 --> 00:46:26,840
I could feel that as a mom,
I'd care for her differently.
509
00:46:29,080 --> 00:46:32,680
I'd just be there
to bring out what was already there.
510
00:46:34,800 --> 00:46:35,760
That's happiness.
511
00:46:37,320 --> 00:46:38,040
Come.
512
00:46:39,000 --> 00:46:40,560
Come on, Tatiana.
513
00:46:40,720 --> 00:46:42,720
Hello!
514
00:46:46,760 --> 00:46:48,920
Several times,
I thought about miracles.
515
00:46:49,080 --> 00:46:50,440
Are you dancing?
516
00:46:50,600 --> 00:46:52,560
Go on, dance!
517
00:46:52,720 --> 00:46:55,560
A miracle isn't
when something exceptional happens.
518
00:46:57,200 --> 00:46:57,880
Great.
519
00:46:58,040 --> 00:46:59,920
It's when everything's fine.
520
00:47:22,360 --> 00:47:23,840
- Hi!
- Hi!
521
00:47:24,760 --> 00:47:25,640
How are you?
522
00:47:26,320 --> 00:47:27,160
Good.
523
00:47:27,800 --> 00:47:29,760
This is going to be a school,
you know?
524
00:47:30,280 --> 00:47:32,040
- A school?
- Yes.
525
00:47:33,160 --> 00:47:34,280
For little kids.
526
00:47:35,120 --> 00:47:37,600
For little kids like you -
or big kids like you.
527
00:47:38,120 --> 00:47:39,720
No, I'm 10.
528
00:47:39,880 --> 00:47:41,920
You're 10? Then you're really big.
529
00:47:42,080 --> 00:47:43,160
Yes.
530
00:47:43,320 --> 00:47:44,680
Littler kids than you.
531
00:47:46,440 --> 00:47:49,040
My little sister is five.
532
00:47:49,200 --> 00:47:50,160
Yeah?
533
00:47:50,560 --> 00:47:53,040
- More like that.
- Yes.
534
00:47:53,200 --> 00:47:56,360
It's a school
for kids with little problems.
535
00:47:57,520 --> 00:47:59,320
Or big problems, really.
536
00:48:01,280 --> 00:48:03,720
I visited a day hospital.
537
00:48:05,120 --> 00:48:08,160
The users, as they were called,
were left to their own devices.
538
00:48:09,840 --> 00:48:11,800
The care staff,
in their white tunics,
539
00:48:11,960 --> 00:48:14,440
waited to see
what the children supposedly wanted.
540
00:48:17,440 --> 00:48:20,320
I didn't want Penelope
to end up in a hospital.
541
00:48:21,680 --> 00:48:24,240
I only saw one solution:
to set up a school.
542
00:48:27,280 --> 00:48:29,960
With some friends,
we set up the MAIA,
543
00:48:30,120 --> 00:48:34,200
the School for Autistic Child
Learning and Integration.
544
00:48:51,000 --> 00:48:51,840
Look at me.
545
00:48:53,280 --> 00:48:54,040
That's good.
546
00:48:54,200 --> 00:48:55,560
Point to Daddy.
547
00:49:01,120 --> 00:49:02,520
Point to Rafou.
548
00:49:04,040 --> 00:49:06,320
Yes!
549
00:49:06,480 --> 00:49:09,000
Look at me. Point to Daddy.
550
00:49:09,600 --> 00:49:11,840
Yes, that's great!
551
00:49:12,880 --> 00:49:14,880
Show me Mommy.
552
00:49:15,040 --> 00:49:17,560
It's hard
to look at that footage now.
553
00:49:19,680 --> 00:49:22,760
I seem like a prisoner
to my obsession with recovery.
554
00:49:23,600 --> 00:49:27,560
I was determined to teach you
the so-called preschool requirements:
555
00:49:27,720 --> 00:49:32,320
naming, categorizing,
language acquisition.
556
00:49:34,000 --> 00:49:36,800
Look there.
557
00:49:37,160 --> 00:49:40,520
I remember your face,
a few months after the school opened.
558
00:49:42,000 --> 00:49:44,160
You were at the back
of the little classroom.
559
00:49:45,040 --> 00:49:47,480
I saw your head loll back
and get stuck.
560
00:49:48,600 --> 00:49:50,280
You had stopped breathing.
561
00:49:52,000 --> 00:49:54,600
It went on long enough
for me to panic.
562
00:49:56,720 --> 00:49:58,680
As the school was getting going,
563
00:49:58,840 --> 00:50:02,120
you showed the first signs
of loss of learning.
564
00:50:03,120 --> 00:50:05,720
You'd forget what you had learned
by the next day.
565
00:50:08,960 --> 00:50:10,560
I thought of my grandmother.
566
00:50:13,040 --> 00:50:15,720
She was right:
there's no point in school.
567
00:50:22,320 --> 00:50:24,040
Give them to me.
568
00:50:24,200 --> 00:50:27,280
Ah, that's good.
569
00:50:27,440 --> 00:50:30,320
Pelo... come here.
570
00:50:30,480 --> 00:50:32,560
Pelo, can you see?
571
00:50:32,720 --> 00:50:35,080
Do you want to sleep,
under the blanket?
572
00:50:35,240 --> 00:50:38,120
Under the blanket of Pelo.
573
00:50:38,280 --> 00:50:40,440
Do you want to sleep, with the bears?
574
00:50:41,320 --> 00:50:42,360
Pelo, catch.
575
00:50:42,960 --> 00:50:44,240
Catch.
576
00:50:44,400 --> 00:50:47,280
There you go. Throw it to Beatrice.
577
00:50:50,800 --> 00:50:52,600
Now I'll throw it back to you.
578
00:50:53,320 --> 00:50:55,720
Pelo. Catch.
579
00:50:56,960 --> 00:50:58,320
Throw it again.
580
00:51:02,640 --> 00:51:03,320
Pelo?
581
00:51:06,480 --> 00:51:09,800
Today I just feel despondency
and despair.
582
00:51:10,840 --> 00:51:14,680
I've been bringing Penelope
to Tomatis for four years now
583
00:51:14,840 --> 00:51:16,480
and nothing's changed.
584
00:51:16,640 --> 00:51:17,960
Now she has apnea.
585
00:51:18,120 --> 00:51:21,680
She stops breathing
and throws her head back.
586
00:51:22,800 --> 00:51:26,760
I can't bring myself to admit
that this illness is stronger than me
587
00:51:26,920 --> 00:51:30,200
and stronger than anything I can do
to fight against it.
588
00:51:45,960 --> 00:51:48,280
This illness is monstrous.
589
00:51:52,240 --> 00:51:53,880
It's a monster.
590
00:52:02,160 --> 00:52:03,800
I've spent four years of my life
591
00:52:04,080 --> 00:52:09,120
doing nothing
but try to save Penelope.
592
00:52:19,760 --> 00:52:22,840
But knowing that this illness
is stronger than us,
593
00:52:23,600 --> 00:52:25,240
what does "saving" even mean?
594
00:52:37,120 --> 00:52:39,600
Saving also means saving yourself.
595
00:53:02,160 --> 00:53:04,760
Throughout all those years,
I stuck at it.
596
00:53:10,320 --> 00:53:13,520
Looking back now,
it seems like an endless day.
597
00:53:17,000 --> 00:53:20,200
I see myself as blind
to what lay in store for me.
598
00:53:24,880 --> 00:53:27,800
And that obstinacy came back to me,
like a boomerang.
599
00:53:33,680 --> 00:53:35,960
It's hard
to see yourself in the illusion.
600
00:53:37,640 --> 00:53:39,520
It's as if it wasn't me.
601
00:54:50,080 --> 00:54:52,200
When the diagnosis was given,
602
00:54:52,360 --> 00:54:54,480
our family and friends were there,
603
00:54:54,640 --> 00:54:57,040
shocked and stunned by the news.
604
00:54:58,120 --> 00:55:00,200
They called, they came,
they took turns.
605
00:55:00,360 --> 00:55:02,320
They couldn't believe their eyes.
606
00:55:03,040 --> 00:55:04,640
Then the years went by
607
00:55:04,800 --> 00:55:07,680
and that extraordinary life
became commonplace.
608
00:55:07,840 --> 00:55:10,480
It was the life
of a family with a sick child.
609
00:55:12,080 --> 00:55:13,400
But what did I want?
610
00:55:14,840 --> 00:55:16,880
For them to provide support,
every day?
611
00:55:17,040 --> 00:55:18,200
They had lives too,
612
00:55:18,360 --> 00:55:21,120
with their own problems,
their jobs and children.
613
00:55:24,760 --> 00:55:26,240
We'd see our neighbors,
614
00:55:26,400 --> 00:55:29,560
who were used to seeing
Penelope cutting her breath off.
615
00:55:31,760 --> 00:55:34,840
At first they thought she had asthma
and was out of breath.
616
00:55:36,560 --> 00:55:39,800
But when they saw that every morning
her face turned blue,
617
00:55:39,960 --> 00:55:41,720
they stopped asking questions.
618
00:55:43,560 --> 00:55:44,880
It was a relief.
619
00:55:45,720 --> 00:55:47,720
But it also seemed unacceptable,
620
00:55:47,880 --> 00:55:50,520
for our own neighbors
to just get used to it.
621
00:55:51,320 --> 00:55:53,640
The girl on floor 8 stops breathing.
622
00:55:53,800 --> 00:55:56,120
The girl on floor 7
is learning the guitar.
623
00:55:56,960 --> 00:55:57,960
That's how it is.
624
00:56:12,800 --> 00:56:14,280
Are you OK?
625
00:56:24,520 --> 00:56:28,000
Hey, come on, don't do that.
626
00:56:34,160 --> 00:56:35,080
Shall we go out?
627
00:56:35,240 --> 00:56:38,240
No, I want to go outside.
628
00:56:41,160 --> 00:56:43,080
I hurt myself!
629
00:56:43,240 --> 00:56:44,480
Come and see Daddy.
630
00:56:54,560 --> 00:56:55,840
Come on, Pelo.
631
00:57:06,760 --> 00:57:09,760
One day,
I went to buy shoes with Penelope.
632
00:57:10,920 --> 00:57:12,720
The place was busy and hot.
633
00:57:14,240 --> 00:57:17,680
Penelope was impatient,
circling around the store.
634
00:57:19,240 --> 00:57:22,560
The salesman was crouched down,
looking for a pair of shoes.
635
00:57:23,640 --> 00:57:26,280
Penelope came over to him
and hit him on the back.
636
00:57:27,320 --> 00:57:28,840
The man turned around and said,
637
00:57:29,000 --> 00:57:32,920
"She shouldn't be in here.
She should be in a hospital.
638
00:57:33,080 --> 00:57:35,320
"I don't sell shoes
to disabled people."
639
00:57:38,560 --> 00:57:39,880
We went out.
640
00:57:42,560 --> 00:57:44,440
In the street, I went to pieces.
641
00:57:46,880 --> 00:57:48,400
I thought about the war.
642
00:57:57,560 --> 00:57:59,760
Another time, I ran into a neighbor.
643
00:58:01,680 --> 00:58:02,920
"How long do they live?
644
00:58:03,840 --> 00:58:05,520
"Aren't there places for them?"
645
00:58:07,320 --> 00:58:08,440
I didn't say anything.
646
00:58:13,080 --> 00:58:15,920
Five minutes later,
Penelope burst out sobbing.
647
00:58:24,960 --> 00:58:29,200
Monsters should be accepted
and venerated,
648
00:58:30,400 --> 00:58:33,360
those unusual, wild creatures
that frighten us,
649
00:58:34,120 --> 00:58:37,600
who constantly remind us
that humans can be like this too.
650
00:58:46,680 --> 00:58:49,520
A hundred years ago,
they were shown at fairs.
651
00:58:50,360 --> 00:58:51,600
For a few pennies,
652
00:58:51,760 --> 00:58:53,960
you could gaze
in revulsed fascination
653
00:58:54,120 --> 00:58:55,880
at the fate you had escaped.
654
00:58:58,480 --> 00:59:01,960
Now we shut those monsters away
in day hospitals,
655
00:59:02,120 --> 00:59:04,440
where no one can pry,
656
00:59:04,600 --> 00:59:08,200
with psychotropic drugs,
psychologists and psychiatrists,
657
00:59:08,360 --> 00:59:11,200
who tell you
to accept the loss of your child.
658
00:59:15,560 --> 00:59:17,880
That's why I'm filming Penelope
for you.
659
00:59:19,680 --> 00:59:23,360
The camera is a shield
that protects us from people's gaze.
660
00:59:25,960 --> 00:59:28,480
And it's the weapon
that helps me to hold out.
661
00:59:45,440 --> 00:59:49,160
My friends said, "You have to accept
your daughter's illness.
662
00:59:49,320 --> 00:59:50,680
"You've tried everything."
663
00:59:52,000 --> 00:59:54,320
I should accept
my daughter's illness.
664
00:59:54,480 --> 00:59:57,040
It sounded like brainwashing to me.
665
00:59:57,200 --> 00:59:59,760
No, I shouldn't accept anything.
666
00:59:59,920 --> 01:00:02,000
I wasn't done with the war.
667
01:00:06,280 --> 01:00:08,680
Some evenings,
when I looked at Penelope,
668
01:00:09,880 --> 01:00:14,240
I saw a sort of ectoplasm
that had lodged in her body,
669
01:00:14,400 --> 01:00:16,280
that had gone in through her neck,
670
01:00:17,120 --> 01:00:19,680
like a mad spirit
that had poisoned her.
671
01:00:21,080 --> 01:00:23,320
Maybe some other sort of medicine
could help.
672
01:00:24,400 --> 01:00:27,600
The West had lost
that link with the invisible.
673
01:00:31,400 --> 01:00:33,480
Our rational vision of medicine
674
01:00:33,640 --> 01:00:36,560
couldn't comprehend
the evil eating away at Penelope.
675
01:00:43,400 --> 01:00:45,360
I had heard about a powerful shaman
676
01:00:46,160 --> 01:00:49,640
that lived on the Tsaatan land,
in the north of Mongolia.
677
01:00:53,920 --> 01:00:56,840
My family and I traveled out there.
678
01:00:58,040 --> 01:01:01,920
We traveled the country,
to the Siberian border.
679
01:02:31,720 --> 01:02:36,400
To get to the Tsaatan,
we had to cross the Taiga at night,
680
01:02:36,560 --> 01:02:40,280
a sacred forest,
inhabited by bears and wolves.
681
01:02:43,720 --> 01:02:45,160
I couldn't see anything.
682
01:02:46,160 --> 01:02:47,160
All I could hear
683
01:02:47,320 --> 01:02:49,520
was the sound of clogs,
sinking into the mud.
684
01:02:50,240 --> 01:02:52,080
I held on to my horse's mane.
685
01:02:55,480 --> 01:02:58,920
Some horses had fallen,
from mosquito bites.
686
01:03:17,080 --> 01:03:18,160
And Penelope?
687
01:03:19,960 --> 01:03:21,920
She had disappeared with the night.
688
01:03:23,080 --> 01:03:24,400
What if she fell?
689
01:03:27,040 --> 01:03:27,840
Why was I there?
690
01:03:29,400 --> 01:03:31,200
For the miracle of healing?
691
01:03:55,480 --> 01:03:58,400
In the early morning,
when we arrived,
692
01:03:58,560 --> 01:04:01,400
I felt as if
I had gone through the looking glass.
693
01:04:50,080 --> 01:04:53,640
Penelope went up to the reindeer
as if she had always known them.
694
01:04:55,040 --> 01:04:59,520
I felt my inability to do something
that seemed so natural to her.
695
01:05:00,360 --> 01:05:03,480
What would happen
if I went over to those animals?
696
01:05:03,640 --> 01:05:05,000
Would they bite me?
697
01:05:07,280 --> 01:05:10,040
As we moved toward the unknown,
698
01:05:10,200 --> 01:05:12,920
alongside children
eating with their hands,
699
01:05:13,960 --> 01:05:16,920
Penelope's disability
waned considerably.
700
01:05:25,720 --> 01:05:26,640
Far from Paris
701
01:05:26,800 --> 01:05:29,160
and the insistence
that people walk upright,
702
01:05:29,320 --> 01:05:32,840
that they respect
codified rules and criteria.
703
01:05:33,000 --> 01:05:35,240
Penelope seemed more relaxed.
704
01:05:52,640 --> 01:05:56,440
Then it was time for the ceremony,
to call on the spirts.
705
01:05:58,880 --> 01:06:00,280
The message was clear.
706
01:06:02,000 --> 01:06:05,680
All I had to do was to carry on
being Penelope's mother.
707
01:06:08,080 --> 01:06:11,520
My daughter had access
to an exceptional way of seeing.
708
01:06:12,640 --> 01:06:15,480
Her senses were sharpened,
unlike anyone else's.
709
01:06:16,520 --> 01:06:18,480
Penelope was my master.
710
01:06:18,640 --> 01:06:21,240
She would make me see the world
differently.
711
01:06:26,720 --> 01:06:30,000
But the idea of a being
that had inhabited her body
712
01:06:30,160 --> 01:06:31,800
never left me.
713
01:07:06,320 --> 01:07:07,320
Penelope.
714
01:07:08,200 --> 01:07:13,560
You remind me of a black diamond,
repulsing every assault.
715
01:07:15,240 --> 01:07:18,200
I've often thought
that nothing works for you.
716
01:07:19,360 --> 01:07:21,440
You forced me
to keep looking elsewhere,
717
01:07:21,600 --> 01:07:23,680
further on, for other solutions.
718
01:07:25,360 --> 01:07:29,520
I took you to Turkey for two weeks,
for an introductory sports course.
719
01:07:31,680 --> 01:07:35,080
I was alone,
in a hotel room in Istanbul.
720
01:07:36,680 --> 01:07:38,160
I was in front of the mirror.
721
01:07:39,040 --> 01:07:41,840
I took the time
to look at myself in detail.
722
01:07:42,680 --> 01:07:45,720
I realized how much my body
had changed in seven years.
723
01:07:48,400 --> 01:07:50,920
Seven years,
without looking at that body.
724
01:07:52,720 --> 01:07:55,600
Life has slipped away
through the interstices of the war.
725
01:07:57,600 --> 01:07:59,240
I looked sad.
726
01:08:00,640 --> 01:08:03,960
But I didn't look like the image
that the mirror reflected back.
727
01:08:04,960 --> 01:08:07,600
To reassure myself,
I picked up my phone.
728
01:08:07,760 --> 01:08:09,640
I choose my best-looking profile.
729
01:08:12,320 --> 01:08:15,480
My facial expression was neutral,
but not sad.
730
01:08:15,640 --> 01:08:17,720
That's more what I looked like.
731
01:08:19,640 --> 01:08:21,480
That's how I wanted to see myself.
732
01:09:20,600 --> 01:09:21,760
Again.
733
01:09:23,200 --> 01:09:25,800
Yes.
734
01:09:25,960 --> 01:09:27,240
Pedal.
735
01:09:29,240 --> 01:09:31,480
More.
736
01:09:32,240 --> 01:09:33,160
Brake. Pedal.
737
01:09:36,040 --> 01:09:36,960
Brake.
738
01:09:44,480 --> 01:09:45,560
Let's start over.
739
01:09:46,320 --> 01:09:47,280
Sit down.
740
01:09:48,560 --> 01:09:50,800
Put your foot down. Off you go.
741
01:09:51,320 --> 01:09:53,120
It's easy with your right foot.
742
01:09:54,480 --> 01:09:55,320
Go ahead.
743
01:10:00,680 --> 01:10:03,120
OK, third time lucky.
Put your foot on.
744
01:10:04,440 --> 01:10:05,320
Put it on.
745
01:10:07,080 --> 01:10:08,200
Now push.
746
01:10:11,600 --> 01:10:13,800
No. Put your feet on the ground.
747
01:10:15,600 --> 01:10:16,440
Put your foot on.
748
01:10:18,520 --> 01:10:21,160
There we go. That's good. Great.
749
01:10:28,800 --> 01:10:29,640
Now stop.
750
01:10:31,920 --> 01:10:33,360
When we got back from Turkey,
751
01:10:33,520 --> 01:10:36,200
we started developing sport
at the MAIA.
752
01:10:37,240 --> 01:10:38,960
OK...
753
01:10:39,120 --> 01:10:41,400
That became your main activity.
754
01:10:42,400 --> 01:10:44,280
You could channel your movements
755
01:10:44,440 --> 01:10:46,840
and be more in synch
with your environment.
756
01:10:48,120 --> 01:10:51,480
Sport opened up a space for you
to be autonomous and to flourish.
757
01:11:03,640 --> 01:11:07,680
Three! Two! One! Stop!
758
01:11:07,840 --> 01:11:10,080
Reach for the sky.
759
01:11:21,800 --> 01:11:24,720
I have contradictory feelings
about you.
760
01:11:25,760 --> 01:11:27,280
I love you as you are,
761
01:11:28,280 --> 01:11:30,840
but I like it
when you're like other people.
762
01:11:32,040 --> 01:11:35,960
I loved seeing you run 10 kilometers,
without stopping,
763
01:11:36,120 --> 01:11:37,880
with thousands of other people.
764
01:11:39,680 --> 01:11:42,160
For an hour and a half,
you melted into the crowd,
765
01:11:42,320 --> 01:11:44,360
no different from everyone else.
766
01:11:45,000 --> 01:11:47,920
You were part of the social fabric,
which is essential.
767
01:11:49,960 --> 01:11:54,120
It took years of endurance
and training to get there.
768
01:11:55,560 --> 01:11:56,680
I'm proud.
769
01:11:58,320 --> 01:12:00,200
And I can feel that you're proud to.
770
01:12:03,040 --> 01:12:05,200
But marathons aren't my thing.
771
01:12:06,520 --> 01:12:08,680
Something frightens me
about feeling pride
772
01:12:08,840 --> 01:12:11,720
in an event that has everyone
doing the same thing.
773
01:12:26,720 --> 01:12:28,640
I wasn't trying to save you anymore.
774
01:12:30,000 --> 01:12:31,560
I wanted to surprise you.
775
01:12:34,680 --> 01:12:37,040
That's one of the mysteries
that I felt with you.
776
01:12:37,840 --> 01:12:40,880
It seems that you've seen
and heard everything.
777
01:12:41,560 --> 01:12:42,680
That you know.
778
01:12:44,160 --> 01:12:47,080
To surprise you,
we had to find a whale,
779
01:12:47,240 --> 01:12:49,400
a monster big enough to amaze you.
780
01:12:50,360 --> 01:12:51,800
We were on the boat.
781
01:12:52,360 --> 01:12:55,760
They said, "Jump in, it's there!
Swim without making a sound!"
782
01:12:56,640 --> 01:12:58,080
I dived
783
01:12:58,240 --> 01:13:01,440
and I found myself face to face
with the whale and its calf.
784
01:13:06,480 --> 01:13:08,360
It looked at me with its huge eye.
785
01:13:12,160 --> 01:13:14,840
It seemed to be saying
it had been there for ages,
786
01:13:15,840 --> 01:13:18,520
longer than me, than us, than humans.
787
01:13:20,320 --> 01:13:23,320
It had been traveling the seas
for 50 million years.
788
01:13:26,200 --> 01:13:29,400
That timescale
put my problems into perspective.
789
01:13:37,440 --> 01:13:39,240
The whale and its calf.
790
01:13:41,600 --> 01:13:42,560
Or maybe you.
791
01:13:43,280 --> 01:13:46,840
You showed me the proof of the bond
between a mother and her daughter,
792
01:13:47,000 --> 01:13:50,800
that unconditional love,
divested of any expectations...
793
01:13:52,760 --> 01:13:55,280
that exists in the pure presence
of the moment.
794
01:14:02,680 --> 01:14:04,720
Do you think it would like that?
795
01:14:04,880 --> 01:14:06,960
Do you want to give that
to the sheep?
796
01:14:07,800 --> 01:14:08,960
Give it to the sheep.
797
01:14:15,680 --> 01:14:17,560
Give it to the sheep.
798
01:14:18,320 --> 01:14:19,480
Give it the biscuit.
799
01:14:23,200 --> 01:14:24,600
Go ahead, Pelo.
800
01:14:41,760 --> 01:14:43,920
But if I look deep within myself,
801
01:14:44,960 --> 01:14:47,200
in a little part of my mind,
802
01:14:47,360 --> 01:14:49,800
there's still room
for a possible miracle.
803
01:14:52,520 --> 01:14:54,320
It's like a little imp,
804
01:14:54,480 --> 01:14:56,320
getting weaker over the years,
805
01:14:56,480 --> 01:14:58,520
but perking up
whenever he's called on.
806
01:15:00,040 --> 01:15:02,240
That's what people call hope,
for sure.
807
01:15:33,720 --> 01:15:36,120
When you plow up the earth
with your hands,
808
01:15:36,280 --> 01:15:38,720
it's like that's all you need
809
01:15:38,880 --> 01:15:40,480
and that's good.
810
01:15:45,760 --> 01:15:51,040
But if I leave you for hours,
I worry about your survival.
811
01:15:52,960 --> 01:15:54,320
The earth covers you up
812
01:15:54,480 --> 01:15:57,000
and you start
to melt into the scenery.
813
01:15:58,320 --> 01:16:00,200
That makes my head spin.
814
01:16:00,360 --> 01:16:02,560
I feel myself disappearing with you.
815
01:16:05,120 --> 01:16:06,600
It's stronger than I am.
816
01:16:06,760 --> 01:16:09,040
At some point,
I always interrupt you.
817
01:16:31,960 --> 01:16:35,360
People describe your movements
as stereotyped,
818
01:16:35,520 --> 01:16:37,880
but are they not like
two musical staves...
819
01:16:39,480 --> 01:16:43,080
with your left hand marking time,
while your right tells the story?
820
01:16:44,040 --> 01:16:47,400
Or are they not a dance,
creating an imaginary landscape?
821
01:16:57,760 --> 01:16:59,760
Like Penelope, in the Odyssey,
822
01:16:59,920 --> 01:17:03,840
you're weaving and unweaving
a vast cloth or your daily invention.
823
01:17:05,160 --> 01:17:06,600
Is that one of your tricks?
824
01:17:08,520 --> 01:17:10,480
But the analogy seems facile.
825
01:17:11,440 --> 01:17:14,360
Such things are just
interpretative flights of fancy,
826
01:17:14,520 --> 01:17:17,600
an insatiable thirst
to put things into words,
827
01:17:17,760 --> 01:17:20,480
to search for symbols,
to find meaning.
828
01:17:26,960 --> 01:17:32,840
No, as Fernand de Ligny would say,
those movements have no purpose.
829
01:17:33,320 --> 01:17:35,440
They stand in
for nothing in particular.
830
01:17:56,040 --> 01:17:57,320
Attention...
831
01:18:02,400 --> 01:18:03,880
The ship's breaking up!
832
01:18:04,040 --> 01:18:07,480
Let's get the boat! Quick, take it!
833
01:19:21,800 --> 01:19:23,120
Not on Pelo.
834
01:19:25,840 --> 01:19:28,160
Do you want to go for a walk
with Pelo or not?
835
01:19:29,520 --> 01:19:31,120
- Yes.
- OK.
836
01:19:32,160 --> 01:19:33,080
Pelo!
837
01:19:42,760 --> 01:19:43,640
Come on.
838
01:19:45,000 --> 01:19:45,960
Take a walk.
839
01:19:54,400 --> 01:19:55,920
What's up, Enzo?
840
01:19:57,320 --> 01:19:58,440
I can't see you.
841
01:19:59,200 --> 01:20:00,800
Do you want to touch the camera?
842
01:20:03,240 --> 01:20:06,760
- Max!
- Do you think that Max is in there?
843
01:20:09,120 --> 01:20:11,760
Do you want to walk with Pelo?
Can you help here?
844
01:20:19,480 --> 01:20:21,520
You like that.
Do you want to film Pelo?
845
01:20:22,960 --> 01:20:24,720
Do you want to see how to do it?
846
01:20:33,520 --> 01:20:34,440
No.
847
01:20:35,600 --> 01:20:37,120
That's enough. Stop it.
848
01:20:40,400 --> 01:20:41,800
No, no.
849
01:20:45,040 --> 01:20:45,960
Come on.
850
01:20:47,880 --> 01:20:50,320
Penelope. Enzo,
851
01:20:51,160 --> 01:20:56,000
You're punks, you're anarchists,
you're lost causes.
852
01:20:58,200 --> 01:21:00,560
I wonder
what we normopaths are lacking,
853
01:21:01,160 --> 01:21:02,400
to live with you.
854
01:21:02,560 --> 01:21:05,200
Pelo, go back to Enzo.
855
01:21:05,360 --> 01:21:07,600
To accept you as you are.
856
01:21:18,200 --> 01:21:19,160
I'm filming you, Pelo.
857
01:21:19,320 --> 01:21:21,440
I don't know what else to do.
I can't sleep.
858
01:21:32,800 --> 01:21:35,800
I can't sleep and nor can you.
I don't know what to do.
859
01:21:49,680 --> 01:21:51,840
Pelo, stop grinding your teeth.
860
01:21:56,520 --> 01:21:58,640
We have to sleep.
861
01:21:58,800 --> 01:22:01,240
Sleep, darling.
862
01:22:02,120 --> 01:22:03,240
You need to sleep.
863
01:22:06,840 --> 01:22:08,840
Pelo.
864
01:22:09,000 --> 01:22:11,640
Mom's filming.
865
01:22:11,800 --> 01:22:13,360
Let's go to sleep now.
866
01:22:16,960 --> 01:22:18,520
Go to sleep now, OK?
867
01:22:19,560 --> 01:22:21,800
I'm going to bed. You go to sleep.
868
01:22:46,200 --> 01:22:48,400
Shall we go to sleep, Pelo?
869
01:23:08,560 --> 01:23:10,040
I'll switch the camera off.
870
01:23:16,960 --> 01:23:18,920
Pelo, you didn't sleep last night.
871
01:23:22,680 --> 01:23:24,960
Go to bed.
872
01:23:25,600 --> 01:23:27,240
Look, the sun's coming up.
873
01:23:45,480 --> 01:23:48,520
Do you think it'll be a nice day?
It looks like it will.
874
01:23:52,600 --> 01:23:54,200
OK, see you later.
875
01:23:56,360 --> 01:23:58,840
I'm going back to sleep too.
See you later.
876
01:24:03,920 --> 01:24:06,160
You didn't sleep for two weeks.
877
01:24:07,920 --> 01:24:09,960
I tried to rest in the morning.
878
01:24:12,080 --> 01:24:14,320
I could feel
the ground sinking beneath me
879
01:24:14,480 --> 01:24:16,480
and the ceiling spinning around.
880
01:24:18,400 --> 01:24:19,920
I took a shower.
881
01:24:20,080 --> 01:24:22,400
I pinched myself, to feel my body.
882
01:24:25,120 --> 01:24:28,480
No, I hadn't gone mad.
I was still real.
883
01:24:30,040 --> 01:24:31,960
But I had gone beyond a limit.
884
01:24:32,120 --> 01:24:33,560
My body was giving out.
885
01:24:35,160 --> 01:24:37,600
Pelo, Patrice is coming this morning.
886
01:24:38,240 --> 01:24:39,440
Your grandfather.
887
01:24:41,680 --> 01:24:44,920
He's going to take you for a walk
and I'm going to sleep.
888
01:24:45,880 --> 01:24:48,640
And then Marie's coming.
889
01:24:50,440 --> 01:24:51,600
Your aunt.
890
01:24:54,440 --> 01:24:56,680
She'll take you for another walk.
891
01:25:02,080 --> 01:25:03,600
Do you want to go to the park?
892
01:25:06,160 --> 01:25:09,200
And Tatiana will come back
in the early afternoon.
893
01:25:11,800 --> 01:25:13,880
She went to dance, with some friends.
894
01:25:33,600 --> 01:25:37,360
From that day onward,
I couldn't live with you anymore.
895
01:25:45,320 --> 01:25:47,440
That really shook me up.
896
01:25:52,520 --> 01:25:54,440
I needed to reconnect to my body.
897
01:25:57,520 --> 01:25:59,480
For us to be
two separate bodies again.
898
01:28:03,120 --> 01:28:05,920
Robert Gillan
Subtitling: Hiventy by TransPerfect
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