WEBVTT

00:00:00.603 --> 00:00:06.465
I know a man who soars above the city every night.

00:00:06.465 --> 00:00:09.459
In his dreams, he twirls and swirls

00:00:09.459 --> 00:00:12.326
with his toes kissing the Earth.

00:00:12.326 --> 00:00:15.140
Everything has motion, he claims,

00:00:15.140 --> 00:00:19.982
even a body as paralyzed as his own.

00:00:19.982 --> 00:00:24.812
This man is my father.

NOTE Paragraph

00:00:24.812 --> 00:00:26.713
Three years ago, when I found out

00:00:26.713 --> 00:00:29.300
that my father had suffered a severe stroke

00:00:29.300 --> 00:00:31.426
in his brain stem,

00:00:31.426 --> 00:00:34.900
I walked into his room in the ICU

00:00:34.900 --> 00:00:37.884
at the Montreal Neurological Institute

00:00:37.884 --> 00:00:40.527
and found him lying deathly still,

00:00:40.527 --> 00:00:43.463
tethered to a breathing machine.

00:00:43.463 --> 00:00:47.894
Paralysis had closed over his body slowly,

00:00:47.894 --> 00:00:49.965
beginning in his toes, then legs,

00:00:49.965 --> 00:00:52.495
torso, fingers and arms.

00:00:52.495 --> 00:00:54.700
It made its way up his neck,

00:00:54.700 --> 00:00:56.905
cutting off his ability to breathe,

00:00:56.905 --> 00:01:01.382
and stopped just beneath the eyes.

00:01:01.382 --> 00:01:03.553
He never lost consciousness.

00:01:03.553 --> 00:01:06.140
Rather, he watched from within

00:01:06.140 --> 00:01:08.446
as his body shut down,

00:01:08.446 --> 00:01:10.583
limb by limb,

00:01:10.583 --> 00:01:13.542
muscle by muscle.

NOTE Paragraph

00:01:13.542 --> 00:01:18.100
In that ICU room, I walked up to my father's body,

NOTE Paragraph

00:01:18.100 --> 00:01:21.699
and with a quivering voice and through tears,

00:01:21.699 --> 00:01:25.112
I began reciting the alphabet.

00:01:25.112 --> 00:01:31.010
A, B, C, D, E, F, G,

00:01:31.010 --> 00:01:35.140
H, I, J, K.

00:01:35.140 --> 00:01:38.092
At K, he blinked his eyes.

00:01:38.092 --> 00:01:40.246
I began again.

00:01:40.246 --> 00:01:44.740
A, B, C, D, E, F, G,

00:01:44.740 --> 00:01:46.750
H, I.

00:01:46.750 --> 00:01:49.888
He blinked again at the letter I,

00:01:49.888 --> 00:01:53.880
then at T, then at R, and A:

00:01:53.880 --> 00:01:55.727
Kitra.

00:01:55.727 --> 00:01:59.685
He said "Kitra, my beauty, don't cry.

00:01:59.685 --> 00:02:04.140
This is a blessing."

00:02:04.140 --> 00:02:06.795
There was no audible voice, but my father

00:02:06.795 --> 00:02:09.843
called out my name powerfully.

00:02:09.843 --> 00:02:12.935
Just 72 hours after his stroke,

00:02:12.935 --> 00:02:14.690
he had already embraced

00:02:14.690 --> 00:02:18.165
the totality of his condition.

00:02:18.165 --> 00:02:20.665
Despite his extreme physical state,

00:02:20.665 --> 00:02:23.621
he was completely present with me,

00:02:23.621 --> 00:02:26.253
guiding, nurturing,

00:02:26.253 --> 00:02:28.503
and being my father as much

00:02:28.503 --> 00:02:31.739
if not more than ever before.

NOTE Paragraph

00:02:31.739 --> 00:02:33.302
Locked-in syndrome

00:02:33.302 --> 00:02:36.703
is many people's worst nightmare.

00:02:36.703 --> 00:02:39.111
In French, it's sometimes called

00:02:39.111 --> 00:02:41.191
"maladie de l'emmuré vivant."

00:02:41.191 --> 00:02:46.512
Literally, "walled-in-alive disease."

00:02:46.512 --> 00:02:48.267
For many people, perhaps most,

00:02:48.267 --> 00:02:51.799
paralysis is an unspeakable horror,

00:02:51.799 --> 00:02:54.140
but my father's experience

00:02:54.140 --> 00:02:56.511
losing every system of his body

00:02:56.511 --> 00:02:59.572
was not an experience of feeling trapped,

00:02:59.572 --> 00:03:03.733
but rather of turning the psyche inwards,

00:03:03.733 --> 00:03:06.928
dimming down the external chatter,

00:03:06.928 --> 00:03:09.853
facing the recesses of his own mind,

00:03:09.853 --> 00:03:11.690
and in that place,

00:03:11.690 --> 00:03:16.470
falling in love with life and body anew.

NOTE Paragraph

00:03:16.470 --> 00:03:19.166
As a rabbi and spiritual man

00:03:19.166 --> 00:03:23.280
dangling between mind and body, life and death,

00:03:23.280 --> 00:03:27.807
the paralysis opened up a new awareness for him.

00:03:27.807 --> 00:03:30.221
He realized he no longer needed to look

00:03:30.221 --> 00:03:33.250
beyond the corporeal world

00:03:33.250 --> 00:03:36.499
in order to find the divine.

00:03:36.499 --> 00:03:40.388
"Paradise is in this body.

00:03:40.388 --> 00:03:44.150
It's in this world," he said.

NOTE Paragraph

00:03:44.150 --> 00:03:48.006
I slept by my father's side for the first four months,

00:03:48.006 --> 00:03:50.120
tending as much as I could

00:03:50.120 --> 00:03:52.765
to his every discomfort,

00:03:52.765 --> 00:03:56.115
understanding the deep 
human psychological fear

00:03:56.115 --> 00:03:59.600
of not being able to call out for help.

00:03:59.600 --> 00:04:03.326
My mother, sisters, brother and I,

00:04:03.326 --> 00:04:07.690
we surrounded him in a cocoon of healing.

00:04:07.690 --> 00:04:09.790
We became his mouthpiece,

00:04:09.790 --> 00:04:13.619
spending hours each day reciting the alphabet

00:04:13.619 --> 00:04:15.981
as he whispered back sermons

00:04:15.981 --> 00:04:19.650
and poetry with blinks of his eye.

00:04:19.650 --> 00:04:25.104
His room, it became our temple of healing.

00:04:25.104 --> 00:04:27.826
His bedside became a site for those

00:04:27.826 --> 00:04:31.911
seeking advice and spiritual counsel, and through us,

00:04:31.911 --> 00:04:34.451
my father was able to speak

00:04:34.451 --> 00:04:36.645
and uplift,

00:04:36.645 --> 00:04:38.636
letter by letter,

00:04:38.636 --> 00:04:41.100
blink by blink.

00:04:41.100 --> 00:04:44.992
Everything in our world became slow and tender

00:04:44.992 --> 00:04:48.356
as the din, drama and death of the hospital ward

00:04:48.356 --> 00:04:51.860
faded into the background.

00:04:51.860 --> 00:04:53.960
I want to read to you one of the first things

00:04:53.960 --> 00:04:58.201
that we transcribed in the week following the stroke.

00:04:58.201 --> 00:05:00.581
He composed a letter,

00:05:00.581 --> 00:05:03.202
addressing his synagogue congregation,

00:05:03.202 --> 00:05:06.711
and ended it with the following lines:

00:05:06.711 --> 00:05:09.190
"When my nape exploded,

00:05:09.190 --> 00:05:11.953
I entered another dimension:

00:05:11.953 --> 00:05:16.610
inchoate, sub-planetary, protozoan.

00:05:16.610 --> 00:05:21.199
Universes are opened and closed continually.

00:05:21.199 --> 00:05:23.258
There are many when low,

00:05:23.258 --> 00:05:25.463
who stop growing.

00:05:25.463 --> 00:05:27.567
Last week, I was brought so low,

00:05:27.567 --> 00:05:31.002
but I felt the hand of my father around me,

00:05:31.002 --> 00:05:34.422
and my father brought me back."

NOTE Paragraph

00:05:34.422 --> 00:05:36.667
When we weren't his voice,

00:05:36.667 --> 00:05:40.000
we were his legs and arms.

00:05:40.000 --> 00:05:42.652
I moved them like I know I would have wanted

00:05:42.652 --> 00:05:45.249
my own arms and legs to be moved

00:05:45.249 --> 00:05:49.141
were they still for all the hours of the day.

00:05:49.141 --> 00:05:53.124
I remember I'd hold his fingers near my face,

00:05:53.124 --> 00:05:57.410
bending each joint to keep it soft and limber.

00:05:57.410 --> 00:05:59.761
I'd ask him again and again

00:05:59.761 --> 00:06:02.258
to visualize the motion,

00:06:02.258 --> 00:06:05.779
to watch from within as the finger curled

00:06:05.779 --> 00:06:09.851
and extended, and to move along with it

00:06:09.851 --> 00:06:12.562
in his mind.

NOTE Paragraph

00:06:12.562 --> 00:06:14.575
Then, one day, from the corner of my eye,

00:06:14.575 --> 00:06:18.298
I saw his body slither like a snake,

00:06:18.298 --> 00:06:21.603
an involuntary spasm passing through the course

00:06:21.603 --> 00:06:23.890
of his limbs.

00:06:23.890 --> 00:06:26.105
At first, I thought it was my own hallucination,

00:06:26.105 --> 00:06:29.660
having spent so much time tending to this one body,

00:06:29.660 --> 00:06:34.320
so desperate to see anything react on its own.

00:06:34.320 --> 00:06:36.980
But he told me he felt tingles,

00:06:36.980 --> 00:06:40.515
sparks of electricity flickering on and off

00:06:40.515 --> 00:06:44.272
just beneath the surface of the skin.

00:06:44.272 --> 00:06:47.579
The following week, he began ever so slightly

00:06:47.579 --> 00:06:50.335
to show muscle resistance.

00:06:50.335 --> 00:06:52.940
Connections were being made.

00:06:52.940 --> 00:06:58.164
Body was slowly and gently reawakening,

00:06:58.164 --> 00:07:01.710
limb by limb, muscle by muscle,

00:07:01.710 --> 00:07:04.641
twitch by twitch.

NOTE Paragraph

00:07:04.641 --> 00:07:07.278
As a documentary photographer,

00:07:07.278 --> 00:07:09.080
I felt the need to photograph

00:07:09.080 --> 00:07:11.280
each of his first movements

00:07:11.280 --> 00:07:13.930
like a mother with her newborn.

00:07:13.930 --> 00:07:18.434
I photographed him taking his first unaided breath,

00:07:18.434 --> 00:07:21.213
the celebratory moment after he showed

00:07:21.213 --> 00:07:25.220
muscle resistance for the very first time,

00:07:25.220 --> 00:07:27.930
the new adapted technologies that allowed him

00:07:27.930 --> 00:07:31.810
to gain more and more independence.

00:07:31.810 --> 00:07:33.823
I photographed the care and the love

00:07:33.823 --> 00:07:36.151
that surrounded him.

NOTE Paragraph

00:07:44.890 --> 00:07:48.304
But my photographs only told the outside story

00:07:48.304 --> 00:07:51.616
of a man lying in a hospital bed

00:07:51.616 --> 00:07:53.270
attached to a breathing machine.

00:07:53.270 --> 00:07:56.892
I wasn't able to portray his story from within,

00:07:56.892 --> 00:08:00.215
and so I began to search for a new visual language,

00:08:00.215 --> 00:08:03.513
one which strived to express the ephemeral quality

00:08:03.513 --> 00:08:07.409
of his spiritual experience.

NOTE Paragraph

00:08:26.026 --> 00:08:28.284
Finally, I want to share with you

00:08:28.284 --> 00:08:31.642
a video from a series that I've been working on

00:08:31.642 --> 00:08:34.910
that tries to express the slow, in-between existence

00:08:34.910 --> 00:08:37.620
that my father has experienced.

00:08:37.620 --> 00:08:41.170
As he began to regain his ability to breathe,

00:08:41.170 --> 00:08:43.802
I started recording his thoughts,

00:08:43.802 --> 00:08:45.726
and so the voice that you hear in this video

00:08:45.726 --> 00:08:48.336
is his voice.

NOTE Paragraph

00:08:48.336 --> 00:08:51.418
(Video) Ronnie Cahana: You have to believe

00:08:51.418 --> 00:08:54.152
you're paralyzed

00:08:54.152 --> 00:08:56.907
to play the part

00:08:56.907 --> 00:09:02.140
of a quadriplegic.

00:09:02.140 --> 00:09:04.108
I don't.

00:09:04.108 --> 00:09:06.694
In my mind,

00:09:06.694 --> 00:09:09.456
and in my dreams

00:09:09.456 --> 00:09:12.296
every night

00:09:12.296 --> 00:09:17.211
I Chagall-man float

00:09:17.211 --> 00:09:20.339
over the city

00:09:20.339 --> 00:09:23.556
twirl and swirl

00:09:23.556 --> 00:09:31.475
with my toes kissing the floor.

00:09:31.475 --> 00:09:38.382
I know nothing about the statement

00:09:38.382 --> 00:09:44.175
of man without motion.

00:09:44.175 --> 00:09:47.799
Everything has motion.

00:09:47.799 --> 00:09:51.150
The heart pumps.

00:09:51.150 --> 00:09:55.446
The body heaves.

00:09:55.446 --> 00:10:00.160
The mouth moves.

00:10:00.160 --> 00:10:04.231
We never stagnate.

00:10:04.231 --> 00:10:11.055
Life triumphs up and down.

NOTE Paragraph

00:10:11.055 --> 00:10:13.131
Kitra Cahana: For most of us,

00:10:13.131 --> 00:10:15.865
our muscles begin to twitch and move

00:10:15.865 --> 00:10:18.373
long before we are conscious,

00:10:18.373 --> 00:10:21.290
but my father tells me his privilege

00:10:21.290 --> 00:10:23.469
is living on the far periphery

00:10:23.469 --> 00:10:26.472
of the human experience.

00:10:26.472 --> 00:10:29.104
Like an astronaut who sees a perspective

00:10:29.104 --> 00:10:32.322
that very few of us will ever get to share,

00:10:32.322 --> 00:10:35.428
he wonders and watches as he takes

00:10:35.428 --> 00:10:37.305
his first breaths

00:10:37.305 --> 00:10:41.344
and dreams about crawling back home.

00:10:41.344 --> 00:10:45.123
So begins life at 57, he says.

00:10:45.123 --> 00:10:48.622
A toddler has no attitude in its being,

00:10:48.622 --> 00:10:54.325
but a man insists on his world every day.

NOTE Paragraph

00:10:54.325 --> 00:10:57.970
Few of us will ever have to face physical limitations

00:10:57.970 --> 00:11:00.928
to the degree that my father has,

00:11:00.928 --> 00:11:04.079
but we will all have moments of paralysis

00:11:04.079 --> 00:11:06.440
in our lives.

00:11:06.440 --> 00:11:09.658
I know I frequently confront walls

00:11:09.658 --> 00:11:12.897
that feel completely unscalable,

00:11:12.897 --> 00:11:15.157
but my father insists

00:11:15.157 --> 00:11:18.030
that there are no dead ends.

00:11:18.030 --> 00:11:23.240
Instead, he invites me into his space of co-healing

00:11:23.240 --> 00:11:26.844
to give the very best of myself, and for him

00:11:26.844 --> 00:11:30.274
to give the very best of himself to me.

00:11:30.274 --> 00:11:33.311
Paralysis was an opening for him.

00:11:33.311 --> 00:11:35.662
It was an opportunity to emerge,

00:11:35.662 --> 00:11:37.856
to rekindle life force,

00:11:37.856 --> 00:11:39.890
to sit still long enough with himself

00:11:39.890 --> 00:11:43.200
so as to fall in love with the full continuum

00:11:43.200 --> 00:11:45.494
of creation.

NOTE Paragraph

00:11:45.494 --> 00:11:49.476
Today, my father is no longer locked in.

00:11:49.476 --> 00:11:52.637
He moves his neck with ease,

00:11:52.637 --> 00:11:55.368
has had his feeding peg removed,

00:11:55.368 --> 00:11:58.150
breathes with his own lungs,

00:11:58.150 --> 00:12:01.634
speaks slowly with his own quiet voice,

00:12:01.634 --> 00:12:03.938
and works every day

00:12:03.938 --> 00:12:09.148
to gain more movement in his paralyzed body.

00:12:09.148 --> 00:12:11.499
But the work will never be finished.

00:12:11.499 --> 00:12:16.212
As he says, "I'm living in a broken world,

00:12:16.212 --> 00:12:19.243
and there is holy work to do."

NOTE Paragraph

00:12:19.243 --> 00:12:21.263
Thank you.

NOTE Paragraph

00:12:21.263 --> 00:12:25.120
(Applause)