I recently listened to an interview with Eric Valor (EricValor.org), an ALS patient and self-proclaimed “world’s first fully functional cyborg.” Because of the progression of his disease, he is dependent on a ventilator and communicates with the world by controlling his computer using an eye tracker. Before his diagnosis, Eric was a surfer, snowboarder and self-taught IT guy. Since his paralysis, Eric has learned the necessary biology to become hugely active in the ALS community. He runs two non-profits, a patient advocacy group and message boards with the goal of evaluating ALS drugs and bringing new treatments into existence. In his interview, he talked about the freedom he experiences without his body. How in the past it was a distraction with its needs — but now he can focus. I’ve been thinking about his statements quite a bit. He has accomplished so much. And the internet is the perfect boundless realm for his active mind. It speaks to something fundamental about being human: our minds can be released, our intelligence and creativity isn’t tied to our senses or our physical experience.
If that seems obvious to you, then I would have disagreed with you before I heard of Eric. My experience with paralysis has been a push in the opposite direction from Eric’s. Eric and I sound pretty similar starting out: he wanted to be an astronaut, he was deeply passionate about surfing and lived near the ocean. We both had an identity intimately tied to our physicality. But he feels free from his body. And I feel closer to mine. I’ve been thinking more about it, I’ve been straining to listen to it’s first weak signals, and I’ve been more aware of it’s strengths and limitations than ever before. Pre-injury I set goals with my mind and pushed myself in that direction, my body whirring quietly in the background like a given. Things used to break and strain and injuries used to come as a surprise and a betrayal. But now I’ve learned so much about what is gone, what is still there, and what is emerging. I feel closer to it than ever before. It can’t shock me now — I see the changes coming.
The difference may be due to how much our bodies are affected. Perhaps with disability our minds are pushed closer and closer to our physical houses, until we can’t communicate any more and are set free. Just a theory. I’ve been thinking about bodies a lot.