12:43
TEDMED 2014

Kitra Cahana: My father, locked in his body but soaring free

Filmed:

In 2011 Ronnie Cahana suffered a severe stroke that left him with locked-in syndrome: completely paralyzed except for his eyes. While this might shatter a normal person’s mental state, Cahana found peace in “dimming down the external chatter,” and “fell in love with life and body anew.” In a somber, emotional talk, his daughter Kitra shares how she documented her father's spiritual experience, as he helped guide others even in a state of seeming helplessness.

- Vagabond photojournalist + conceptual artist
Kitra Cahana is a Canadian photographer who blurs the line between anthropologist and journalist. Full bio

I know a man who soars above the city every night.
00:12
In his dreams, he twirls and swirls
00:18
with his toes kissing the Earth.
00:21
Everything has motion, he claims,
00:24
even a body as paralyzed as his own.
00:27
This man is my father.
00:31
Three years ago, when I found out
00:36
that my father had suffered a severe stroke
00:38
in his brain stem,
00:41
I walked into his room in the ICU
00:43
at the Montreal Neurological Institute
00:46
and found him lying deathly still,
00:49
tethered to a breathing machine.
00:52
Paralysis had closed over his body slowly,
00:55
beginning in his toes, then legs,
00:59
torso, fingers and arms.
01:01
It made its way up his neck,
01:04
cutting off his ability to breathe,
01:06
and stopped just beneath the eyes.
01:08
He never lost consciousness.
01:13
Rather, he watched from within
01:15
as his body shut down,
01:18
limb by limb,
01:20
muscle by muscle.
01:22
In that ICU room, I walked up to my father's body,
01:25
and with a quivering voice and through tears,
01:30
I began reciting the alphabet.
01:33
A, B, C, D, E, F, G,
01:37
H, I, J, K.
01:43
At K, he blinked his eyes.
01:47
I began again.
01:50
A, B, C, D, E, F, G,
01:52
H, I.
01:56
He blinked again at the letter I,
01:58
then at T, then at R, and A:
02:01
Kitra.
02:05
He said "Kitra, my beauty, don't cry.
02:07
This is a blessing."
02:11
There was no audible voice, but my father
02:16
called out my name powerfully.
02:18
Just 72 hours after his stroke,
02:21
he had already embraced
02:24
the totality of his condition.
02:26
Despite his extreme physical state,
02:30
he was completely present with me,
02:32
guiding, nurturing,
02:35
and being my father as much
02:38
if not more than ever before.
02:40
Locked-in syndrome
02:43
is many people's worst nightmare.
02:45
In French, it's sometimes called
02:48
"maladie de l'emmuré vivant."
02:51
Literally, "walled-in-alive disease."
02:53
For many people, perhaps most,
02:58
paralysis is an unspeakable horror,
03:00
but my father's experience
03:03
losing every system of his body
03:06
was not an experience of feeling trapped,
03:08
but rather of turning the psyche inwards,
03:11
dimming down the external chatter,
03:15
facing the recesses of his own mind,
03:18
and in that place,
03:21
falling in love with life and body anew.
03:23
As a rabbi and spiritual man
03:28
dangling between mind and body, life and death,
03:31
the paralysis opened up a new awareness for him.
03:35
He realized he no longer needed to look
03:39
beyond the corporeal world
03:42
in order to find the divine.
03:45
"Paradise is in this body.
03:48
It's in this world," he said.
03:52
I slept by my father's side for the first four months,
03:56
tending as much as I could
04:00
to his every discomfort,
04:02
understanding the deep
human psychological fear
04:04
of not being able to call out for help.
04:08
My mother, sisters, brother and I,
04:11
we surrounded him in a cocoon of healing.
04:15
We became his mouthpiece,
04:19
spending hours each day reciting the alphabet
04:21
as he whispered back sermons
04:25
and poetry with blinks of his eye.
04:27
His room, it became our temple of healing.
04:31
His bedside became a site for those
04:37
seeking advice and spiritual counsel, and through us,
04:39
my father was able to speak
04:43
and uplift,
04:46
letter by letter,
04:48
blink by blink.
04:50
Everything in our world became slow and tender
04:53
as the din, drama and death of the hospital ward
04:56
faded into the background.
05:00
I want to read to you one of the first things
05:03
that we transcribed in the week following the stroke.
05:05
He composed a letter,
05:10
addressing his synagogue congregation,
05:12
and ended it with the following lines:
05:15
"When my nape exploded,
05:18
I entered another dimension:
05:21
inchoate, sub-planetary, protozoan.
05:23
Universes are opened and closed continually.
05:28
There are many when low,
05:33
who stop growing.
05:35
Last week, I was brought so low,
05:37
but I felt the hand of my father around me,
05:39
and my father brought me back."
05:43
When we weren't his voice,
05:46
we were his legs and arms.
05:48
I moved them like I know I would have wanted
05:52
my own arms and legs to be moved
05:54
were they still for all the hours of the day.
05:57
I remember I'd hold his fingers near my face,
06:01
bending each joint to keep it soft and limber.
06:05
I'd ask him again and again
06:09
to visualize the motion,
06:11
to watch from within as the finger curled
06:14
and extended, and to move along with it
06:17
in his mind.
06:21
Then, one day, from the corner of my eye,
06:24
I saw his body slither like a snake,
06:26
an involuntary spasm passing through the course
06:30
of his limbs.
06:33
At first, I thought it was my own hallucination,
06:35
having spent so much time tending to this one body,
06:38
so desperate to see anything react on its own.
06:41
But he told me he felt tingles,
06:46
sparks of electricity flickering on and off
06:48
just beneath the surface of the skin.
06:52
The following week, he began ever so slightly
06:56
to show muscle resistance.
06:59
Connections were being made.
07:02
Body was slowly and gently reawakening,
07:04
limb by limb, muscle by muscle,
07:10
twitch by twitch.
07:13
As a documentary photographer,
07:16
I felt the need to photograph
07:19
each of his first movements
07:21
like a mother with her newborn.
07:23
I photographed him taking his first unaided breath,
07:25
the celebratory moment after he showed
07:30
muscle resistance for the very first time,
07:33
the new adapted technologies that allowed him
07:37
to gain more and more independence.
07:39
I photographed the care and the love
07:43
that surrounded him.
07:45
But my photographs only told the outside story
07:56
of a man lying in a hospital bed
08:00
attached to a breathing machine.
08:03
I wasn't able to portray his story from within,
08:05
and so I began to search for a new visual language,
08:08
one which strived to express the ephemeral quality
08:12
of his spiritual experience.
08:15
Finally, I want to share with you
08:38
a video from a series that I've been working on
08:40
that tries to express the slow, in-between existence
08:43
that my father has experienced.
08:46
As he began to regain his ability to breathe,
08:49
I started recording his thoughts,
08:53
and so the voice that you hear in this video
08:55
is his voice.
08:57
(Video) Ronnie Cahana: You have to believe
09:00
you're paralyzed
09:03
to play the part
09:06
of a quadriplegic.
09:08
I don't.
09:14
In my mind,
09:16
and in my dreams
09:18
every night
09:21
I Chagall-man float
09:24
over the city
09:29
twirl and swirl
09:32
with my toes kissing the floor.
09:35
I know nothing about the statement
09:43
of man without motion.
09:50
Everything has motion.
09:56
The heart pumps.
09:59
The body heaves.
10:03
The mouth moves.
10:07
We never stagnate.
10:12
Life triumphs up and down.
10:16
Kitra Cahana: For most of us,
10:23
our muscles begin to twitch and move
10:25
long before we are conscious,
10:27
but my father tells me his privilege
10:30
is living on the far periphery
10:33
of the human experience.
10:35
Like an astronaut who sees a perspective
10:38
that very few of us will ever get to share,
10:41
he wonders and watches as he takes
10:44
his first breaths
10:47
and dreams about crawling back home.
10:49
So begins life at 57, he says.
10:53
A toddler has no attitude in its being,
10:57
but a man insists on his world every day.
11:00
Few of us will ever have to face physical limitations
11:06
to the degree that my father has,
11:09
but we will all have moments of paralysis
11:12
in our lives.
11:16
I know I frequently confront walls
11:18
that feel completely unscalable,
11:21
but my father insists
11:24
that there are no dead ends.
11:27
Instead, he invites me into his space of co-healing
11:30
to give the very best of myself, and for him
11:35
to give the very best of himself to me.
11:38
Paralysis was an opening for him.
11:42
It was an opportunity to emerge,
11:45
to rekindle life force,
11:47
to sit still long enough with himself
11:49
so as to fall in love with the full continuum
11:51
of creation.
11:55
Today, my father is no longer locked in.
11:57
He moves his neck with ease,
12:01
has had his feeding peg removed,
12:04
breathes with his own lungs,
12:07
speaks slowly with his own quiet voice,
12:10
and works every day
12:13
to gain more movement in his paralyzed body.
12:15
But the work will never be finished.
12:21
As he says, "I'm living in a broken world,
12:23
and there is holy work to do."
12:28
Thank you.
12:31
(Applause)
12:33

▲Back to top

About the Speaker:

Kitra Cahana - Vagabond photojournalist + conceptual artist
Kitra Cahana is a Canadian photographer who blurs the line between anthropologist and journalist.

Why you should listen

Kitra Cahana is a wanderer. The American-born photographer was raised in Canada and Sweden, with a father who worked as a rabbi and took his family along with him everywhere he traveled. Cahana's itinerant childhood is evident in her work, which has taken her to teenage "rainbow parties," Venezuelan spiritual rituals, Ukranian Ultra-Orthodox prayer sites, American boxcars and bus stops and many more places. The 2014 TED Fellow embeds herself in the societies she documents, playing the part of photojouralist as well as enthnographer.

More profile about the speaker
Kitra Cahana | Speaker | TED.com