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

I remember the story of Jean-Dominique Bauby in “The Diving Bell and the Butterfly” Rabbi Cahana’s experience is at least as moving, easier for and American Jew to relate to.

TED Blog

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…

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