In her TEDMED 2014 talk, photographer Kitra Cahana shared a new visual language accompanying the extraordinary story of her father’s severe brainstem stroke, a catastrophe that they transformed into an inspiring and imaginative spiritual journey. She spoke with us via email about her talk and her father’s progress.
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 in the summer of 2011 – my father’s brain stem stroke, and the profound spiritual awakening that followed – with others. When my father first had his stroke, I wrote down these words, and whispered them to him when I first came to his bedside: “We only ever needed one pair of hands, two legs, a respiratory system to keep the world afloat between us.” This became my mantra. We can sustain ourselves through each other. 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, so devoted to his limp body and to allowing him to communicate all that was bursting to come out from within, 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, so too do we continue to act in that capacity, sharing his words and his Torah with others.
Why does this talk matter now? What impact do you hope the talk will have?
To me, this talk should be timeless. In fact, 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 (that’s what he’s called it), watching with curiosity as his body reawakens tingle by tingle, twitch by twitch. 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 – my father would also say – with G-d. I tried to recreate this kind of in-betweenness (in between the inside and the outside, heaven and earth, body and mind) in the video series and photographs that I have been working on and that I presented in the TEDMED talk.
What kind of meaningful or surprising connections did you make at TEDMED?
I met a wonderful woman at TEDMED who runs a high-end rehabilitation center in Boca Raton, Dr. Lisa Corsa. Our chance encounter at the coat check turned into a half-hour consultation, wherein she reaffirmed our family’s sense of what intensive rehabilitation should look like. A body that has had every system affected as severely as my father’s needs hours of attention each day if there’s any intention for it to make functional progress. A body that doesn’t move hardens; it stiffens and withers away.
We have a wonderful circle of volunteers who give so much of themselves, but it’s not enough. Dr. Corsa helped me get a sense of how far we have to go to advocate and fundraise for my father to receive the minimum amount of proper care and attention. He’s currently living in an institution with limited human resources, and as a result we are only able to provide limited access to physiotherapists each week. She affirmed my resolve to fight for my father’s right to basic daily movement and to seek the funds for intensive physiotherapy, so that he can eventually move back home.
Please share anything else you wish you could have included in your talk.
Since my father’s stroke, I have 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 since made great progress, including some partial to full recoveries. We share and compare our experiences online.
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 and life. 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 and their support systems. 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.