Three years ago, Rabbi Ronnie Cahana suffered a rare brain stem stroke that left him fully conscious, yet his entire body paralyzed. It’s a condition known as “locked-in syndrome.”
Last month, TED Fellow Kitra Cahana spoke of her father’s experience at TEDMED (watch her talk, “My father, locked in his body but soaring free”), revealing how her family cocooned Rabbi Cahana in love, and how a system of blinking, in response to the alphabet, patiently allowed him to dictate poems, sermons and letters to his loved ones and to his congregation.
Kitra began documenting her father’s recovery in photographs and video, creating layered images that — in contrast to her photojournalistic work — are more abstract and emotional. “I wanted to try to find a way to take photographs that reflected the mystical things that were happening in the hospital room,” she says. “How do I explain, in a photograph, the power that another human being has to either add or detract from the healing of another person? I started a process of trying to tell a story in images.”
As Rabbi Cahana began to regain his ability to speak, Kitra started recording his voice. She is now in the process of developing this body of work for an exhibition to help raise support for his ongoing care and rehabilitation.
Below, see Kitra’s stunning images — accompanied by her father’s poems — and hear more about the thoughts behind them. But first, a Q&A with Rabbi Cahana himself, in which he describes his own experience.
Rabbi Cahana, on being locked in
Can you tell us what happened, from your point of view?
In July of 2011, upon returning from a weeklong visit to my mother and sister’s home in Houston, I had a stroke that shut down my body into a complete paralysis besides my mind and my uneasy use of my weakened, blurred eyes. Locked-in syndrome, they called it. “The air weighs a hundred pounds,” I wanted to say to anyone who was interested.
I was not in discomfort. I felt the sensation of touch on me, and surrounding me. I was sure that I had a helmet over my head to safeguard me. My neck itself seemed to weigh fifty pounds. A mysterious tortoise-shell immediately clasped me and kept me safe whenever needed. With my torso secure, my limbs felt doubled — the wooden petrified ones tethered by leather straps to ones jumping and slapping around. It was my duty to bring these fiery, spirited, animated parts to merge with my outer deadwood. I worked incessantly through sleepless nights and tyrannical days to fuse the miniature into the large. I kept hearing sirens from outside the hospital interrupting this task. It took about a year until each member became whole again, until they became one.
It took me three and a half months to get off the artificial breathing machine. That was my first miraculous victory. The next task was to get my epiglottis active. They wanted to give me thickened food — puréed this-and-that — whereas I wanted raw vegetables and fruit. I was denied the right to drink water for months over months. Water is the source of life, that which I craved most as an elixir. I dreamt of it. I tasted it. I could sense the coldness and the raw beauty of thirst — parched parts quenched. These days I eat whatever I want, whatever I am blessed with. I have a good physio who stands me upright, and a speech therapist to bring out the voice.
How would you describe your mental and emotional state during the time of being locked in?
The stroke transcended me. I don’t know much about it except that I was replanted into the ground and found my discombobulated bodyparts spread across the landscape. My holy work of these last three years has been to re-unify from a central whirlwind of light — dizzying, upside-down, topsy-turvy. I want to grow this plant of mine out of the underground. I imagine this is what every seed sees before it proceeds.
Doctors live by science and statistics. Rabbis live by inner spirit and G-dliness. Nobody has ever asked me what it’s like to have a paralyzed digit — fingers that lead a motionless existence. I, too, refrain from asking: “How does it feel to handle dried-up bones? Do you fear a life without movement?” But this is the under-exchange of everyone in touch with those who can’t touch back. My biggest loss is the gentle caress that I once could give.
Throughout this process, the air I breathe has been full with open prayers of love, with eyes upon me, soothing, cooing soft-spoken kindnesses. My family wiggles my flapping shoulder blades to revive them. My congregation visits me as if agreeing that nothing has happened; there is no loss, there is only us today and our future. We all ease each other’s lives. I am wondrously happy for the privilege of seeing life in this dimension. I capture miracles in instants. Challenge is privilege. It is a privilege to live this story.
The images Kitra takes of you feel very vulnerable and reflective. Did your father-daughter relationship change dramatically after the stroke?
I am in awe of Kitra’s art and her desire to unstiffen what is locked up. She finds communities of the locked-away; she researches for breakthroughs and latest up-to-date machinery and medical advances. She speaks the language of negating the impossible. She champions me through pitfalls and traps of institutional clumsiness. She sees me already walking through the streets; she chaperones me down the halls of my returning. It is wondrous to never be defeated. Transformation is celebratory.
I loved Kitra the same in the instant of her birth. She created me as a father that day. I’ve only begun to emerge as she nurses me and nurtures me up to a sense of knowing what it means to be alive. My love for her and all my children has deepened in the emergency status. There is only intimate language in the presence of a precious person of your own issue. The privilege of parenthood is even more daunting than the responsibility. I am overwhelmed with the gratitude of being remade in my children’s image now that they are adults. I tell them I see G-d’s face when they present their loving glow. They are the Sabbath candles themselves.
You wrote texts to go with each of Kitra’s images. To whom are they addressed? They seem to be meditations on consciousness rather than communication. After your illness, was all your communication in this form?
After coming to consciousness, the mind narrowed to simple whispers. I was bare-faced and raw matter. The blessing ‘to bless’ in Hebrew is “Yisai Adonai Panav Elecha,” or “May G-d lift your countenance.” “Ya’er Panav Elecha v’Chuneka.” “May G-d’s light illuminate your face and bring forth your grace.” Or as King David said, “From G-d’s divine light we see light.” At the moment of arising from the stroke, I felt G-d lift my face and pierce into an inner glow. I spoke to that light and from it all at once. I understood that everyone gets this brilliant radiance early in life, and I know that it’s a mere temporary flash to return to again and again. This is enlightened consciousness. It’s a flash that I ever try to retrieve.
All my writings are love songs to G-d. I only have thanks. G-d has given me a future again. And this is a glimpse (the marvel) of eternity’s touch.
Your texts refer to a passionate love. Is this about the love between husband and wife, or love for the divine?
Both. G-d’s challenge to each human being is to reach the fullest extent of your capacity to love and ever grow it, ever test it, ever push it. That’s why we are created and how we continue creating ourselves. The passionate love of me to my wife, my wife to me, is an embodiment of the challenging love that the Almighty presents before us. How much of the heavenly abode do we bring into our love? Loving [my wife] Karen, she loving me, brings us to seek the Almighty’s presence. When I pray to G-d I ask to find Karen. When I’m near Karen, I ask her to help me discover the Creator of Life. This is love language. It doesn’t matter what state of disrepair the body is in. This is the heart’s fullest reach. Nothing has changed in our love for each other. I am alive because I live for Karen’s eyes upon me once again.
To read the full interview, including a Q&A with Kitra Cahana, visit the TED Blog >>>