Fellows Friday TED Fellows

What’s it like to live with locked-in syndrome? One family’s experience

TED Fellow Kitra Cahana shares the story of her father at TEDMED. Photo: Courtesy of TEDMED

Kitra Cahana shares the extraordinary story of her father’s brain stem stroke, a catastrophe that transformed into an inspiring spiritual journey. Photo: TEDMED

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 writes: "You have to believe you’re paralyzed to play the part of a quadriplegic. I don’t. In my mind and in my dreams every night I Chagall-man float over the city, twirl and swirl, with my toes kissing the floor. I know nothing about this statement of man without motion. Everything has motion. The heart pumps, the body heaves, the mouth moves, the eyes turn inside-out.  We never stagnate. Life triumphs up and down." Image: Kitra Cahana

Rabbi Cahana writes, “You have to believe you’re paralyzed to play the part of a quadriplegic. I don’t. In my mind and in my dreams, every night I Chagall-man float over the city, twirl and swirl, with my toes kissing the floor. I know nothing about this statement of man without motion. Everything has motion. The heart pumps, the body heaves, the mouth moves, the eyes turn inside-out. We never stagnate. Life triumphs up and down.” Image: Kitra Cahana

Rabbi Cahana answers our questions 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.

001

Rabbi Cahana writes, “What is beautiful? We can close our eyelids, but it’s hard to close our ears. All directions can come to the ear. We can’t really turn our heads, like in seeing, to a particular angle. Hearing is how G-d responds to prayer. That’s sincere.” Photo: Kitra Cahana

Rabbi Cahana writes, "Oh my wife. I belong to you. I see the skin fold hurry under your eyelids. I want to be your sleep. I walk along your long grace. Your bones are hard to everyone’s stance but not to my fingers’ touch. There are tender demands when you open your lips, your tongue, your teeth. Your teeth are teaching my empty throat. Am I only just now breathing? G-d has given me this. We are face, two legs, alike. We have no weight. Wherever we are, the world is turning. This is nonesuch time." Image: Kitra Cahana

Rabbi Cahana writes, “Oh my wife. I belong to you. I see the skin fold hurry under your eyelids. I want to be your sleep. I walk along your long grace. Your bones are hard to everyone’s stance, but not to my fingers’ touch. There are tender demands when you open your lips, your tongue, your teeth. Your teeth are teaching my empty throat. Am I only just now breathing? G-d has given me this. We are face, two legs, alike. We have no weight. Wherever we are, the world is turning. This is nonesuch time.” Image: Kitra Cahana

Rabbi Cahana writes, “There’s a new kind of slumber with a stroke. You get dizzy, lucid. There is a mini explosion and there is no up. There is no forward. It’s just twisting like a space-man’s walk, tethered to the intangible. It’s amazing. I was lifted into a hoist. I said to myself: Remember you’re in the air for real now. Hover over this bed, and be there more than you are under it.” Video: Kitra Cahana

My dream state is closer to G-d than any open-eyed watch of how foreshortened my wingspan might be. I feel awake and alive and follow through with what my body can’t seem to do. It’s not pretending when I say I believe this is only temporary. It is my open-aired will that makes these three years seem like only a blink. And still I see the world stumble by and I criticize its footwork. I still believe I walk more gracefully. After all, who among us is really sure-footed?

Rabbi Cahana writes, “My dream state is closer to G-d than any open-eyed watch of how foreshortened my wingspan might be. I feel awake and alive and follow through with what my body can’t seem to do. It’s not pretending when I say I believe this is only temporary. It is my open-aired will that makes these three years seem like only a blink. And still I see the world stumble by and I criticize its footwork. I still believe I walk more gracefully. After all, who among us is really sure-footed?” Image: Kitra Cahana

Rabbi Cahana writes, "I singsong my body as its own cradle. Back and up head and down. There is a floating whir on my skin. Only a year and a half later will it dissipate. Its the skinny skin that crinkles. My eyes stay closed. All of life now will forever be whispers. But G-d’s ear is here." Image: Kitra Cahana

Rabbi Cahana writes, “I singsong my body as its own cradle. Back and up head and down. There is a floating whir on my skin. Only a year and a half later will it dissipate. Its the skinny skin that crinkles. My eyes stay closed. All of life now will forever be whispers. But G-d’s ear is here.” Image: Kitra Cahana

Kitra Cahana answers our questions about these images

What has your father’s experience been like for you?

It has been a shift in my trajectory. My father’s experience of the stroke was one of endless spirituality and curiosity and this mystical understanding of how to heal. He’s a rabbi, a spiritual leader and poet and as such often spoke in this kind of otherly language about reality and his experience — a very surreal, poetic language. His language has a cadence of its own. Sometimes it can be difficult to understand, but it speaks to me on a deep level. Somehow it’s very accessible to me.

We were raised on mystical ideas about G-d. ‘Does G-d exist?’ was never a relevant or pertinent question to my spirituality. The root question to ask is: How do people experience existence? Do you have an experience of a G-d or a G-dlike concept? is more telling to me, than declaring one’s belief in an unknown. I’ve approached a lot of what my father has said regarding his stroke in the same manner. I don’t question what he says, as in: ‘Did that really happen?’ He had many visions when the stroke first struck him. In one, he had an encounter, standing before G-d, wherein the totality of his own life, his own soul, accused him for all his wrong-doings and shortcomings. His own father’s soul came to his defense, and pleaded for my father to get more life. I don’t question whether that is real or not. I listen to him openly, trying to just understand what his experience of reality looks like.

How do you do that? How does he communicate?

Right after the stroke, we communicated through a blinking methodology where the transcriber recites the alphabet and he would blink at each letter. People started flocking to our ICU room, and then our hospital room, and he would hold these long conversations with them. Congregants, nurses and orderlies would come to his bedside at their break time and, through us, my father would counsel them. It was all in this very, very slow time — this sort of otherly orbit that was created in midst of the hustling, bustling hospital.

Initially, communication was extremely disorienting. Until we got into a good rhythm and flow — and established how to initiate vowels, and other shortcuts — there were so many miscommunications. We would recite the alphabet, A, B, C, D, and he would wait to blink at the correct letter. Afterwards he told us that anticipating each letter was excruciating. He would keep his eyes wide open, in fear that he would blink at the wrong letter and our whole communication would get thrown off. There were so many moments to misread what he wanted to say. Even when he started mouthing, and then speaking intermittently, it continued — and continues — to be difficult. Initially we tried different methods. We tried to do the alphabet of most commonly used letters, but there were a lot of confusions. There’s another smart system wherein the locked-in patient divides his or her gaze into different quadrants, and then divides each quadrant again to indicate a specific letter. We could have learned that language, but I think my father was in such a rush to express all the things running through his mind that the simple ABCD method was the easiest.

Can he feel his body right now?

He always had sensation. But he describes his first sensation as though he were floating through the ether. He has this strange description that each of his limbs were dead logs and tethered to each was this miniature limb that was just full of spirit — zinging all over the room. He said there was a rope attached to each of these smaller limbs, and that if the rope wasn’t there, these limbs would just fly across the world, to everywhere. I don’t necessarily understand his physical experience. He describes it as being rebirthed at 57 — that he was conscious, going through the birth canal. He says ‘I’m two years old now.’ To him that’s a complete privilege and blessing.

Initially, I started documenting him in the style that I know — traditional journalistic photographs. But those photographs were so literal. Those images spoke to the care and the love in our hospital room, but they weren’t able to access the deeper soul experience. My challenge was to find a visual language that would be in dialogue with our spiritual and emotional landscape.

Did changing your usual style feel good?

I’ve never felt like my documentary work reflected my inner essence. In a way, when I work on a story — documenting in a traditional documentary manner — I feel as though my role between my subject and the audience is one of a medium. There’s a subject who passes through my lens, my aesthetic filter, in order to reach an audience, a public. I can overlay an aesthetic voice to that, but I never felt like I was giving it my voice. Photographing my father — layering images, video and audio on top of each other — it’s the first time I’m expressing something deep inside of me in a photographic language. I’ve never felt that way about my work before. It’s the first seed. But it’s lovely growing into this new place with my father as a collaborator and subject.

What motivated you to speak at TEDMED?

It’s very difficult to express the sublime and the surreal in words and photographs. I wanted to attempt to communicate all that my family had experienced – my father’s brain stem stroke, and the profound spiritual awakening that followed – with others. This is what my father taught us; he said that all who came into his room of healing should expect to be healed themselves. Healing has to be mutual.

The stroke ruptured my reality as well as his. In those initial months, I saw sides of myself I never knew existed. I would have loved for him to have spoken at TEDMED himself but, as in the hospital — where my mother, sisters, brother and I acted as his mouthpiece — we continue to act in that capacity.

What impact do you hope the talk will have?

Part of my father’s message is that he hopes others will step outside of the space-time hustle and bustle that many of us are so used to. He experiences life in a kind of slow-time. He spent and continues to spend hours alone with himself.  That space of aloneness with his thoughts is not a place of anxiety, but a place of joy and introspection. I hope that others get a sense of this slow-space-time, where you exist only with yourself, with those other humans that you are intimate with, and – as my father would also say – with God.

Since my father’s stroke, I’ve become involved in a global community of people who have experienced brain stem strokes, either personally or on the part of a loved one. They are either still fully locked-in or have made progress, including some partial to full recoveries. So many of those who have experienced being locked-in were written off too early. Their families were told to expect very little. As a result, they did not receive proper rehabilitation therapies, nor were their bodies moved on a daily basis to maintain a minimum quality of comfort. I’ve seen health care professionals refuse to address the locked-in patient directly, speaking about him or her in the third person, insensitive to the fact that the person is still completely conscious and able to communicate. We struggle every day to sensitize health care professionals and institutions.

Healing is taxing. But what is even more taxing is trying to heal in systems and institutions that drain the already low reserves of patients. My father was able to have the spiritual experience that he had because he had a family and a congregation that preserved him in his role as father, husband and rabbi and advocated for him when he wasn’t able to.

You said before that he can feel his body now. To what extent?

He’s made huge progress — he breathes by himself, he predominantly has his own speaking voice to rely on now. It wanes, but he conducted a wedding last year, and he teaches in the synagogue. He has some motion capabilities. A lot of it’s about getting stronger; it’s really hard to rebuild an entire body all at once. I don’t know if or when he’s going to reach his limits, but that’s not an important question to me. To me, it’s about being part of his healing support network.

002

Rabbi Cahana writes, “When my brain exploded my body flew apart onto my backyard, only ten times larger. My mind landed on top of the hedges. One arm a mile away, another arm over here. Legs here, legs there. The torso somewhere else. It was my job to somehow bring these all back together. To bring the body back to the head. This was my spiritual duty.” Image: Kitra Cahana

Want to support Rabbi Cahana? Find out how.

And special thanks to TEDMED, for contributing to this piece.