My father, locked in his body but soaring free

Published on Oct 19, 2014

At TEDMED, photographer Kitra Cahana shares a new visual language accompanying the extraordinary story of her father’s severe brainstem stroke, a catastrophe that transforms into an inspiring and imaginative spiritual journey.

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 [...] continue the story

Re-imagining my disease…

I like to make up stories to comfort myself. Today’s pretend is that I share the same soul with a warrior nun in fantasy Shogun dimension. When I feel like my hand is being stabbed, it’s because she’s battling in her epic quest to save her world from evil. Something in the universe just got our nervous systems crossed, and that’s how she’s able to survive where others wouldn’t. I wish her well!

One of the most important things I have learned over the course of my disease is that there’s no use making excuses. People can’t see my illness, so they don’t understand what I’m going through. My disease makes me unreliable, lazy, upset, and distracted. My experience is debilitating pain, fatigue, anxiety and despair about what I’m going through, and preoccupation with managing my symptoms. But that doesn’t change what it looks like from the outside. I could say it’s not my fault, which is absolutely true, but that just looks like whining and excuses.

I have another option, though. I can OWN it. Yeah, I have to sit a lot. Yeah, I stroll along the sidewalk. Yes, I’m a princess and will ask for the comfortable chair from you. [...] continue the story